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From our latest Research Update Newsletter:

Many study reports have suggested that people with lupus have an increased risk for blood clots, but the degree of this increased risk has varied widely across studies. In addition, previous studies have found that anti-malarial drugs such as hydroxychloroquine (Plaquenil) may decrease the risk for blood clots, but the patients in these studies might have had different amounts of these treatments, or had differing severity of lupus for differing amounts of time. This could have led to confusion about whether it was the Plaquenil protecting these patients or some other factors. In this study, the researchers hoped to determine the risk of developing blood clots in people with lupus, while factoring in the year of diagnosis and disease severity.

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Lupus Researchers Will Examine Ways to Best Apply Findings From Lupus Mouse Model to Human Lupus - 09/01/2010 10:39 AM

Nearly 200 lupus researchers, clinicians and representatives from government, industry, academia and nonprofit organizations involved in lupus research will gather on the campus of the National Institutes of Health to look at ways to best apply research findings from lupus mouse models to human lupus. The agenda includes presentations from twenty scientists, including discussions about new insights into lupus gained from clinical studies and animal models, advances and challenges in treating lupus, analysis of the genetics of lupus in humans and animals, and the future of lupus research and treatment.

“This meeting is bringing together researchers that are experts in mouse models of lupus and human lupus,” says Dr. Gary Gilkeson, Professor of Medicine at the Medical University of South Carolina, and Chair of the Lupus Foundation of America (LFA)’s Medical-Scientific Advisory Council. “The goal will be to review the current state of research in mouse models of lupus and how they can best be applied to human lupus in defining new biomarkers, new genes and new treatments of disease.”

This meeting on September 2-3 at the National Library of Medicine in Bethesda, Maryland is sponsored by the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), National Institute of Allergy and Infectious Diseases (NIAID), National Cancer Institute (NCI), and NIH Office of Research on Women’s Health (ORWH). The LFA assisted with meeting planning and has helped to underwrite a portion of the expenses associated with the meeting as part of its ongoing support for research to advance the science and medicine of lupus.

During this meeting participants will discuss similarities, as well as differences, seen in human disease and animal models. Organizers are also hopeful that participants may be able to develop a consensus around the most important features of lupus and what animal models might be most useful in future studies of the disease. The LFA will report additional details of the meeting in a future issue of The Lupus Research Report. If you don’t already receive LFA’s eNewsletter you can sign up for free.

Read more about the upcoming meeting.

15 Questions with Dr. Peter Chira - Back to School with Lupus - 08/30/2010 11:06 AM

Back-to-school time can be quite stressful for both kids and parents – new teachers, new schedules, or even a new school. For those with lupus, it could be even more demanding. Join us this month as we invite you to submit back to school questions to Dr. Peter Chira.

Peter Chira, M.D., M.S., is an instructor of pediatric rheumatology at Stanford University School of Medicine and practices at Lucille Packard Children's Hospital. His research interests focus on improving the transition and educational process for adolescents with rheumatic diseases, including those systemic lupus erythematosus, and evaluating the role of information technology in this transition.

Submit your questions to Dr. Chira by September 7. Answers will be posted to the LFA website by September 20.

Review transcripts from our previous 15 Questions and Web Chats

Learn more about 15 Questions

If you have a question about lupus that is not associated with this month’s topic, we invite you to submit your inquiry to our LFA Health Educators and your question will be answered as soon as possible.

For August, the LFA invited you to join us for the "Oral Issues of Lupus" Q&A with Dr. Michaell A. Huber and "How Lupus Can Affect the Eyes" Q&A with Dr. Mary Beth Rhomberg. This was your opportunity to ask questions and for the first time, learn from two experts.

Read Dr. Huber's Q&A

Read Dr. Rhomberg's Q&A

Read previous transcripts

Walk for Lupus Now® is the LFA’s signature fundraising and awareness event which annually occurs in over 70 communities across the nation. Walks held during late August and September are:

Hydroxycholoroquine May Protect Against Skin Involvement in Lupus - 08/23/2010 10:43 AM

Many people with lupus develop skin rash early on in the course of their illness. This is especially true in people from minority populations, such as African-Americans and Hispanics. Anti-malarial drugs such as hydroxycholoroquine are not just used for skin involvement, but are widely prescribed for lupus patients due to their ability to reduce inflammation and delay the absorption of damaging ultraviolet light by the skin. In this study, researchers hoped to learn what factors have an impact on how much time it takes for a lupus patient to develop skin damage.

Learn more

Sodium Girl Guest Blog - Part 3: Beating Odds and Eggs - 08/20/2010 11:02 AM

Now that you know my story, let me introduce you to my passion – low sodium cooking. What I love most about making low sodium meals (besides eating them of course) is that it constantly reminds me to turn trials into triumphs.

So for those of you, who must take on the task of a restricted diet, here are a few recipes to prove that you can make anything low sodium and you can make it taste really good.

Faux-Miso Marinated Cod:

One of my proudest achievements so far, as a low sodium cook, has been creating a recipe for Faux Miso-Marinated Cod. If you have never experienced the real thing, a two-day, miso bath gives this already fatty fish a sweet and silky flavor that truly melts in your mouth. The problem? Miso contains over 700mg of sodium per tablespoon and the thick, fermented flavor and dark, mahogany color it provides is essential to mastering this meal. But I wasn’t going to let that minor detail stop me from enjoying this dish and I was determined to find a way to mimic the taste of the miso without the salt.

My successful, low sodium substitution is thanks to a moment of olfactory déjà vu. As my cooking partner scooped out the traditional miso paste, I realized it had a familiar aroma – sweet and musky. I gazed back at my collection of sauces and there it was. Molasses. Dark, syrupy, and bitter sweet, it was the perfect stand-in.

To serve, I suggest some steamed brown rice with either sautéed leeks or wild mushrooms and garlic. Anything earthy will pair nicely with the sweetness of the cod. And do invite over friends. They will be forever impressed and you there’s no need to reveal how easy it was.

Ingredients:

Directions:

1. Heat sake and mirin in a pot over medium flame and simmer for 30 minutes.

2. Remove from heat and add the molasses and sugar and stir until it is dissolved. Allow the mixture to cool.

3. Cut black cod into 6 equal pieces and place in a shallow dish, large enough so that all of the pieces of cod can lay flat.

4. Pour half of the cooled miso marinade into the dish, add cod, and then pour remaining marinade on top. Cover with plastic wrap and refrigerate for 24 hours to 2 days. Turn the fish every so often so that they get an even coating.

5. Preheat broiler on high.

6. When hot, remove cod from marinade and place on a baking sheet on the bottom rack of oven. Broil until caramelized, about 10 minutes. Turn cod over and broil until fish flakes easily, about 3 minutes more.

7. Seriously. That’s the whole recipe. Amazing, right? Now have a glass of wine and admire your work. Chow on.

Hope you enjoyed the 3-part post from Jessica. Visit her at http://sodiumgirl.wordpress.com for more delicious recipes. Check below for entries you may have missed within the last week.

Learn more about Jessica
Part 1: The Detour
Part 2: Not in Kansas Anymore

Human Genome Sciences and GlaxoSmithKline Announce FDA Priority Review Designation for Benlysta® (Belimumab) as a Potential Treatment for Systemic Lupus Erythematosus - 08/19/2010 11:35 AM

Human Genome Sciences, Inc. (Nasdaq: HGSI) and GlaxoSmithKline PLC (GSK) today announced that the U.S. Food and Drug Administration (FDA) has granted a priority review designation to BENLYSTA® (belimumab) as a potential treatment for systemic lupus erythematosus (SLE). A priority review designation is granted to drugs that, if approved, offer major advances in treatment or provide a treatment where no adequate therapy exists. The FDA has assigned belimumab a Prescription Drug User Fee Act (PDUFA) target date of December 9, 2010.

Click here to read the company release

Sodium Girl Guest Blog - Part 2: Not in Kansas Anymore - 08/19/2010 11:31 AM

After four months of being in the hospital - with the help of great medical care, wonderful family and friends, and an enormous amount of support - I became stronger and healthier and miraculously, my kidneys partially regenerated. I had been given a gift—a chance to reenter the world once again. But it was in this moment, when I started to recover, that the real challenge began.

I see now that my toughest battle was not the one for my life, but to reclaim my life as normal. I spent my first five years (post diagnosis) clinging to the idea of an expected course – graduating with my class, working full-time, pushing my body beyond its capabilities. My health quickly became my last priority and everything from doctors appointments to picking up medication fell dangerously to the wayside. I had taken the gift of recovery and run myself right back into the ground.

I had been so focused on tangible goals of success and ambition, that I had forgotten the most important, the most delicate, the most coveted objective of all – health. As my health quickly declined, I realized that if I wanted to live a long life, I needed to make a drastic change…so I did.

I decided that if my life was about my health, then my health would be the muse of my career. I began a blog about the adventures of living on a no-sodium diet, documenting the tasks and cooking experiments that take up much of my time. The blog grew into more articles about wellness, and I quickly realized that the daily health chores that once seemed roadblocks to success had become my greatest assets. I had a defined niche, endless amounts of material, and—most importantly—I was doing something that would not only benefit me, but also others on a similar journey.

I thought that by listening to the needs of my body, my achievements would be stunted. But the results have been quite the opposite. I am now the best version of myself, with the energy and mental capacity to accomplish more than I ever could before. Once I stopped trying to be ordinary, I could begin to approach my illness, my career, and, ultimately, my life by seeking the extraordinary.

Come back tomorrow for the 3rd and final post: Beating Odds and Eggs.
Learn more about Jessica
Visit Jessica at Sodium Girl
Part 1: The Detour

We bring you the first part of Jessica's guest blog today. To read more about Jessica, please visit our previous entry.

Let me introduce myself. My name is Jessica, I have Lupus, and I am a girl on a mission. I join the LFA blog to report from the front lines, as an active 27-year old who, even after 7 years, is still learning how to manage this disease while giving myself the full, healthy, exciting life I want and deserve.

Everyday brings its own set of successes and challenges and I know this journey is a long-term adventure, not just a short road trip. So I invite you to tag along and I hope my story, my shenanigans, and maybe some of my recipes will speak to the ups and downs (and in betweens) you also travel. Maybe we can make some fun pit stops along the way.

The Detour:

In 2004, I was a junior in college, on a clear track to normalcy. I had just finished a semester abroad and was eagerly counting down the hours until I would return to campus, set up my dorm room (hello IKEA), pick my classes, and start my typical, American life again. But little did I know, someone else had very different plans and the path I thought I was on was about to take a sharp turn.

The changes began with an artichoke. I haven’t admitted this to very many people, but it’s true. For my whole life, I had been “sick.” When I was thirteen, I was diagnosed with possible JRA, but none of my blood tests were conclusive. I dealt with joint pain, exhaustion, migraines, and other symptoms on a daily basis and I had built quite a tolerance to it all. So when new symptoms crept up, I usually just added them to the basket of what was already there. But lately, something seemed off. I didn’t know what was wrong, but I knew I didn’t feel well and more importantly, worse than usual. The problem, however, was that I couldn’t point to an arm, or my chest, or my head and say, “Here. This is where it hurts.” The feeling of discomfort wasn’t in one place. It was everywhere. And all I could say was that I felt lousy, drained, and a whole host of other descriptions that barely touched the reality of my symptoms.

All these unexplainable feelings hit their climax one night, over a family dinner – the first since I had been home – when, overwhelmed by unknown discomfort, I chucked a steamed artichoke at my dad. Everyone thought I was crazy. I thought I was crazy. And then, finally, a tangible sign.

I came home that evening with almost twenty pounds of water weight on my frame, liquid literally dripping from my lips and my eyes swollen shut. I was whisked to the hospital where I learned that Lupus was aggressively attacking my brain and kidneys. One week, six seizures, and a pair of failed kidneys later, I realized I would be moving into the hospital for the semester and not my two-room double...

Come back tomorrow for part 2: Not in Kansas Anymore. In the mean time, visit Jessica at her blog - sodiumgirl.com

From the Archives of Lupus Now Magazine: So Long, Salt! - 08/16/2010 10:48 AM

Picnics, grilling, and barbecue. Ah, the beloved staples of summertime. Yet with these seasonal traditions come many salty foods. From the ketchup, pickles, and American cheese you pile on your charcoal-grilled burger to the sodium-laden dips and chips served on the side, it's easy to load up on salt during warm-weather months.

Only 48 hours left to double your donation in support of lupus research! - 08/13/2010 10:58 AM

Your actions are needed as we only have 2 days left to rise to the fundraising challenge posed by Lewis and Sara Katz, longtime LFA supporters who have generously pledged to match all donations made by August 15 – up to $40,000. Now, the deadline is quickly approaching and we need your help to reach our goal!

There is a great need for better ways to treat people living with lupus today. People living with lupus often wait years for an accurate diagnosis and many suffer devastating side effects from existing therapies. Your gift today will be doubled and go farther to help us uncover better ways to care for them.

Please give the gift of hope today.

In many ways, Jillian Bante is like any other college freshman. On her own for the first time at the University of Maryland in College Park, the Rochester Hills, MI, native is taking introductory math, government, English, writing, and philosophy classes. Like most of her fellow students, Bante is living on campus, making new friends, and enjoying her independence. But unlike most of her fellow students, Bante is nearly blind, the result of complications of lupus.

Now 18, Bante was diagnosed with lupus as a 13-year-old high school freshman, after living with juvenile rheumatoid arthritis for three years. In her young life, she has faced numerous hospitalizations and a high-risk stem cell transplant that substantially improved her health, but did not cure her immune disorders or fully restore her sight.

Eye disease occurs in approximately 20 percent of individuals with lupus. In some cases, eye problems are related to the inflammatory process of lupus itself. In other cases, problems may be due to drug treatment (corticosteroids or antimalarials) or may be a separate problem (glaucoma or retinal detachment). In addition, approximately 95% of those living with lupus will experience some form of oral involvement. Disregarding the importance of proper dental care can be a painful and costly error that in some cases may actually be dangerous.

How lupus affects oral health

How lupus affects the eyes

15 Questions with Dr. Rhomberg and Dr. Huber - Eyes and Dental Health - 08/04/2010 10:26 AM

Lupus is a chronic, autoimmune disease that can damage any part of the body including the eyes, teeth and mouth. For those with lupus, the ability to maintain good eye and oral health can decrease potential problems with vision, pain, infection and nutrition.

Immunization reduces the risk of infection and the chance of catching certain diseases. However, the question of which vaccines are safe for people with lupus is a little more complicated. Read more about it in the links below.

15 Questions with Dr. Victoria Werth - The Mysterious Aspects of Skin Lupus - 07/27/2010 09:35 AM

For July, the LFA invited you to join us for the "The Mysterious Aspects of Skin Lupus" Q&A with guest expert Dr. Victoria Werth. This was your opportunity to ask questions and learn from an expert.

Video: Eduardo Xol Creates Garden Oasis with Lupus in Mind - 07/26/2010 09:53 AM

Check out avid LFA supporter and designer Eduardo Xol from ABC’s Extreme Makeover: Home Edition. In the video below, he discusses helping his sister, who has lupus, relax and relieve stress by creating a garden oasis designed with sun sensitivity in mind. You can also read the accompanying blog here.

An Exploration Study of Umbilical Cord Stem Cell Treatment in Lupus - 07/21/2010 11:33 AM

In animal studies, stem cells taken from the umbilical cord (which connects the mother to the baby during pregnancy) have been found to help treat a variety of diseases, including lupus. However, umbilical cord stem cells have not been given to humans before. The researchers hoped to determine whether umbilical cord stem cells could be given safely to people with severe and treatment-resistant lupus, and whether this might help to treat lupus.

Your donation will go twice as far to find a cure and to care for people with lupus if you make your secure online gift today!

That's right: We have been given an exciting opportunity to match your donation - dollar for dollar - through August 15, 2010!

Lewis and Sara Katz, long-time LFA supporters, have generously pledged to match
contributions up to $40,000. If we can raise $40,000 by the August 15 deadline, $80,000 will go to stimulate new areas of lupus research, education, and awareness. Click to give today.

You know that the need is great. People living with lupus often wait years for an accurate diagnosis, and many suffer devastating side effects from existing therapies. Advancing lupus research is the only way that we will be able to find the causes of lupus, develop more effective treatments, and get lupus under control. Your support makes a difference.

Please join our efforts by making a donation today. Remember, your gift will double if we receive it by August 15!

P.S. The LFA is currently reviewing proposals from lupus researchers seeking to advance our knowledge of pediatric lupus, lupus nephritis, reproductive health issues in people with lupus and much, much more. The number of projects we will be able to fund depends on your support. Please be generous.

Lupus Foundation of America Expands Reach to Meet Growing Need for Support Services - 07/16/2010 10:29 AM

The Lupus Foundation of America (LFA) DC/MD/VA Chapter’s merger with Lupus Mid-Atlantic is an example of the efforts being undertaken by the LFA and its chapters to expand and strengthen its national network in order to provide support services to all those affected by lupus. The merger will also add new voices to the LFA’s thousands of lupus advocates across the country who are speaking out on a national and local level for increased support for lupus research and education programs.

The LFA congratulates the LFA, DC/MD/VA Chapter on the merger, which will expand local support services throughout the entire tri-state area, including the District of Columbia, Maryland, and Northern and Central Virginia regions. The LFA’s national affiliated network has a shared mission and vision, and prides itself on offering a level of service that is consistent and meets the organization’s high standards.

Click here to read the LFA, DC/MD/VA press release.

Helpful Information for People with Lupus about Summer Vacations - 07/14/2010 11:37 AM

This is the time of year that everyone likes to get away for a little rest and relaxation. But people with lupus have to take precautions to reduce the possibility of triggering a flare and preventing other complications. Here are three articles that may provide some helpful tips to have a safe and enjoyable trip.

Into the Light- How to live with sun sensitivity
Vacation Inspiration
Traveling When You Have Lupus

Sleep Easy - Why Sleep Is Critical When You Have Lupus - 07/12/2010 11:56 AM

The Summer issue of LFA's Lupus Now® magazine takes a close look at this important aspect of living better with lupus.

Sleep deprivation can be harmful to the immune system. Research done through the National Institute of Neurological Disorders and Stroke has shown that neurons that control sleep interact closely with the immune system.

Learn more

People with Lupus Denied Health Insurance Due to Pre-Existing Condition May Be Able to Obtain Coverage Through Health Care Reform Law Plan - 07/07/2010 10:19 AM

President Obama signed the Health Care Reform package in to law in March 2010, which will extend insurance coverage to as many as 32 million Americans who currently do not have health insurance, as well as provide much-needed protections for people with lupus and other chronic conditions.

Americans who have been denied health insurance coverage because of a pre-existing condition can now apply for the Pre-existing Condition Insurance Plan (PCIP). This temporary program provides insurance to people who have been unable to obtain coverage because of a preexisting condition. The PCIP coverage could start as early as August and will serve as a bridge for people until 2014 when the reform law bans health insurers from denying coverage for pre-existing conditions.

In order to enroll in the PCIP a person must have been without medical insurance for 6 continuous months and have been denied coverage due to their pre-existing condition; documentation of denial is required.

For more information on the PCIP and to learn about what health care coverage is available in your state, visit the new Department of Health and Human Services (HHS) website, www.healthcare.gov.

Each month, the LFA invites you to submit questions to one of our lupus experts on selected topics. We are pleased to feature in July Victoria Werth, MD, chief of the Division of Dermatology at the Philadelphia Veterans Administration Hospital and Professor of Dermatology and Medicine at the University of Pennsylvania School of Medicine, to answer questions related to “The Mysterious Aspects of Skin Lupus”

Dr. Werth is a member of several prestigious professional and scientific societies, including the American Academy of Dermatology, the American College of Physicians, the American College of Rheumatology and the Dermatology Foundation. She is a Feature Editor for the Journal of Clinical Rheumatology and a member of the editorial board of the Journal of the American Academy of Dermatology. In addition, Dr. Werth is a reviewer for several esteemed publications, including the Journal of the American Medical Association, the Journal of Investigative Dermatology, Arthritis & Rheumatism, the Journal of Rheumatology, and the British Journal of Dermatology. She has worked to validate an outcome measure for cutaneous lupus, which will allow evaluation of therapies in terms of their effectiveness on skin disease in lupus.

Among her many awards and honors, Dr. Werth is listed in Who’s Who in America and Best Doctors in America. She is an Ad Hoc Reviewer for the Immunology Panel of the VA Merit Review and she was a Panel Chair and member of the Medical & Scientific Committee Clinical Panel of the Dermatology Foundation. Dr. Werth currently serves on the Lupus Foundation of America’s Medical-Scientific Advisory Council.

Learn more about 15 Questions with Dr. Victoria Werth

Submit your questions by July 12.

Review transcripts of previous Q&A sessions with Lupus Experts

Hello… My name’s Geoff and I’m a statistic.

Okay, I’ll admit it - I have a problem.

Unfortunately no twelve step program’s going to help me through this.

For a start, I was told I had lupus about eight years ago.

“Never heard of lupus… mustn’t be too bad,” I said leaving the surgery after being told to take some malaria pills and to stay out of the sun.

It was all a little confusing; considering the dermatologist didn’t exactly explain there was more than one type of lupus. It took an internet search to scare the hell out of me. And automatically I became one of the under estimated five million people with lupus worldwide.

Eventually, I was told the type of lupus I had was only discoid.

“Oh, that’s good,” I said ignorantly.

And there’s a five percent chance it could progress to the more debilitating form, namely SLE.

“Hmmm, that doesn’t sound too good,” I mumbled, while considering the one-in-twenty possibility.

Did you know that women of color are 2-3 times more likely to develop lupus?

“Not applicable.”

Oh… and only ten percent of people that have lupus are men.

“Is that a good thing?”

But wait there’s more! No two cases of lupus are exactly alike.

“I suppose that makes me unique then.”

And after digesting all those numbers and the associated information, I did feel unique. In Australia, it seemed no one really knew what lupus was – I didn’t.

We had to turn to American websites for information initially, and if we were lucky, there was a lupus organization close to home in the bigger cities on the coast. For a country with a similar land mass to The United States and a total population just above that of New York State alone, you’d appreciate there ain’t much in the middle of Australia. And you’d also appreciate the fact you have a national lupus organization in America. I suppose you don’t miss things unless you’ve never had them.

“I suppose The United States must have the numbers to justify the support and awareness,” I thought.

Once again lupus seemed like a numbers game. One moment it was a game of chance for many. The next moment, anyone with SLE could be forgiven for counting the days until they were feeling well again. And after meeting so many people suffering a great deal more than me, I eventually accepted I was just another minor statistic, but maybe one who was in the position to make a little difference.

For the first time in my life I became a volunteer and never knew how rewarding that could be. It was embarrassing in a way to be genuinely thanked for my efforts, something that had never occurred in a paid employment position before. It was embarrassing because I wasn’t the one who was really going through the tough times and didn’t deserve the attention.

When I have gained attention for lupus awareness, it’s ultimately been about everyone affected by the disease. Thankfully, I’ve recently discovered a new generation of like-minded people here in Australia trying to make a difference and giving us a voice.

I suppose it’s all about generating compassion and understanding. I’ve always believed with awareness, funding will follow. So if that’s what it takes, I don’t mind being a lupus statistic with a passion for raising lupus awareness worldwide. And I’m definitely not about to kick the habit - Especially when ninety percent of my lupus friends are women – good stats for a ten-percenter.

*Geoff is living with discoid lupus in Australia. He has cycled around America to raise lupus awareness and is the Gold Coast officer of The Lupus Association Queensland. His worldwide blog has had hits from over 130 different countries and his original cycling website has generated over 200,000 visits. Geoff has recently established an online lupus news site – The Lupus Magazine*

Jenny's Updates from 9th International Lupus Congress - Day 3 - 06/27/2010 12:50 PM

Today I attended sessions on children and adolescents with lupus. The presentations focused on bone health, puberty and sexual development, and quality of life measurements. One slide reminded us that children are not small adults, and that medications are not created or designed or tested in clinical trials with children; neither is the bone scan machine known as DEXA able to properly measure bone mass density in young people. And let's not forget that young people have different communication skills than adults; nowhere is this more important than in adherence to the medical regimens their doctors set forth. To paraphrase former U.S. Surgeon General C. Everett Koop, "medicine cannot help a person who does not take the medicine."

The emotional health of their young patients is also of great importance to physicians, as well as to parents. Being able to measure how young people feel about themselves and their disease can help them have successful adult lives with lupus. It was very heartwarming to see the dedication of pediatric rheumatologists - and equally disheartening to learn that there are so few to go around - not just in North America, but also throughout the world.

A lovely reception concluded the busy day, and allowed researchers, physicians, people with lupus and their loved ones, staff from patient advocacy groups, and friends to gather together in one of the convention center halls. Awards were presented to the Congress organizers, to the representatives of all the lupus groups, and to LFA staff member, Mary Crimmings. We were even treated to a snappy rendition of ?Fever? by one of the lupus delegates from New Zealand - now that's an International Lupus Congress worth remembering!

Jenny's Updates from 9th International Lupus Congress - Day 2 - 06/26/2010 11:36 AM

Even though 5:30 came way too soon, I was so glad I attended the Walk around the Bay this morning. The sunbeams sparkling on the water, joggers jogging and dogs playing, and all of us in our white t-shirts… Just wait '’til you see the fun photos! Sculptures in the park (crouching red men and scattered white sacks), houseboats that looked like cottages and yachts that looked like —well, mansions; all in all, it was a great way to start the day.

Ask any lupus doc: they'll tell you that people living with lupus are just about the most determined people they know: determined to learn all they can about their disease, determined not to let lupus define who they are. Well, the same goes for the lupus researchers and physicians around the world. On behalf of their patients, they are determined to beat lupus!

Genes markers will one day reveal which person will respond best to which medication. Biomarkers will be able to predict risk for heart disease and thinning bones and blood clots. Improved designs of clinical trials are making possible the first-ever medication specifically for lupus.

Meanwhile, many important lupus studies are underway: antiphospholipid antibodies (Canada), lung involvement (USA), kidney transplants (Spain), memory loss (South Korea), mood and anxiety disorders (Brazil), cognitive function (Chile), the influence of aging (Egypt), lupus nephritis (Iran), cutaneous lupus (Romania), to name just a few, — and of special importance to those with lupus: the LFA presentation on how lupus affects employment, family relationships, and overall well-being.

We are very grateful to the men and women who spend their lives unraveling this complex disease. Stay tuned!

Jenny's Updates from 9th International Lupus Congress - Day 1 - 06/25/2010 09:31 AM

Jenny Palter, editor of Lupus Now Magazine, will be blogging about her experiences at the 9th International Lupus Congress in Vancouver, Canada.

My day in Vancouver at the International Lupus Congress began with registration - 1,200 registrants are expected! Most are lupus researchers and physicians, but also 200 folks who live with lupus (and caregivers, because sometimes it takes a team to help a person live with lupus, doesn't it?!). There are delegates from lupus groups in Canada, Denmark, France, Indonesia, the Republic of Mauritius, the Philippines, New Zealand, Norway, Spain, Sweden, the United Kingdom, and the USA. Wow!

The opening session of the Lupus Patient Congress included a panel

discussion, moderated by LFA Medical Director Joan Merrill, MD, about drugs in development for lupus: belimumab (Benlysta) from Human Genome Sciences; micophenolate mofetil (CellCept) from Vifor; atacicept from EMD Serono; sifalimumab from MedImmune; abatacept from Bristol-Myers Squibb; and epratuzumab from UCB. The presentations were followed by a Q&A period. Audience members asked excellent questions, such as: "What is causing B cells to become overactive?" "Why isn't neuropsychiatric lupus included in the studies?" "Is belimumab steroid-sparing?" and "When will a treatment be developed to treat fatigue?"

At the Welcome Reception we were treated to a performance by members of the Salish Nation of Native Peoples, who have lived in the Vancouver area for 10,000 years. A highlight of the evening was when a traditional hand-carved Talking Stick was presented to Congress Chair John Esdaille. The carvings of the eagle, for insight, the raven, for communication, and the wolf, for lupus, together described the purpose of the Lupus Congress.

The perfect ending to the first day was seeing the darkening sky above the Bay streaked with pink as I made my way back to my hotel room. First, this blog entry. Then, to bed - the Walk for Lupus is at 6 a.m., and it's a full day after that!

Members of the LFA National Staff, along with members of the National Board and the Medical-Scientific Advisory Council will be attending the International Lupus Congress in Vancouver, Canada, June 24-27, 2010.

Follow the LFA on Facebook and Twitter as Jenny Palter, editor of Lupus Now, reports live from the conference. In addition to sharing information from various patient and scientific programs, Jenny will also update us from the walk and various activities around Vancouver.

Click here to read more about LFA’s role and some of the planned conference highlights

15 Questions with Dr. Robert Lahita on Men and Lupus, Now Available - 06/21/2010 10:45 AM

For May, the LFA invited you to join us for the "Men and Lupus" Q&A with guest expert Dr. Robert Lahita. This was your opportunity to ask questions and learn from an expert.

Read Dr. Lahita’s Q & A

The editor of Lupus Now magazine is seeking people to share their stories in the Fall 2010 issue!

These are our topics.

If gentle exercises such as yoga, tai chi, or Pilates have improved your life with lupus, we’d like to hear from you. Write to lupusnow@lupus.org with ‘Gentle’ in the ‘Subject’ line. Please include your contact information and a little bit about yourself and your lupus.

Have you had an experience that taught you something about taking your medications? (For example, with or without a certain beverage or food, at a certain the time of day, or avoiding interactions with other medications.) If so, we’d like to hear from you. Write to lupusnow@lupus.org with ‘Timing’ in the ‘Subject’ line. Please include your contact information and a little bit about yourself and your lupus.

It’s certain that emotional health is linked to physical health. If you have examples of how having a healthy emotional outlook has helped your life with lupus, we’d like to hear from you. Write to lupusnow@lupus.org with ‘Emotions’ in the ‘Subject’ line. Please include your contact information and a little bit about yourself and your lupus.

New Data Shows Epratuzumab Provided Significant Results for Those with Moderate to Severe Lupus - 06/16/2010 03:09 PM

UCB and Immunomedics Inc. announced today that a new lupus drug candidate, epratuzumab, provided a significant reduction in disease activity in patients with moderate to severe active systemic lupus erythematosus (SLE). Findings demonstrate that in a patient population with predominantly severe disease activity, epratuzumab is improving patients' health as quickly as week 12, with the emergence of improvements as early as week 8.

June is Men’s Health Month and it’s time to raise awareness of lupus in men. While lupus disproportionately affects women, it can and does occur in men. In teens and adults, approximately 1 male will develop lupus for every 10 females. After the age of 50, approximately 1 man will develop lupus for every 8 women. In addition, men are more likely to develop drug-induced lupus erythematosus (DILE) because the medications that may trigger DILE are more frequently used in men.

The clinical course of lupus is similar in both women and men and physicians typically use the same therapies. However, researchers have found more severe kidney, nerve, and blood vessel disease in males compared to females.

To learn more about lupus in men, please visit the Men and Lupus section of our website.

Each month, the LFA invites you to submit questions to one of our lupus experts on selected topics. We are pleased to feature in June Robert Lahita, MD, PhD, a renowned lupus clinician, investigator and author, who will answer questions related to “Special Considerations for Men with Lupus.”

Doctor Lahita is Professor of Medicine at Mount Sinai School of Medicine and Chairman of Medicine and Vice President of the Newark Beth Israel Medical Center. He is the editor of Systemic Lupus Erythematosus and Senior Editor of the Textbook of Autoimmunity. Dr. Lahita is also the Associate Editor of the journal Lupus, and also the author of Lupus, Q&A: Everything You Need to
Know. He previously served as Chair of the LFA Board of Directors and
the Medical-Scientific Advisory Council.

Learn more about 15 Questions with Dr. Robert Lahita

Submit your questions by June 7.

Review transcripts of previous Q&A sessions with Lupus Experts

Lupus Foundation of America Says Results of Latest Study of CellCept® Provide Encouragement and Hope for People with Lupus Nephritis - 06/03/2010 09:36 AM

(June 3, 2010 – Washington, DC) LUPUS FOUNDATION OF AMERICA – The Lupus Foundation of America today praised the results of a new long-term study for the treatment of lupus nephritis (lupus-related kidney disease) which demonstrated superiority of CellCept® (mycophenolate mofetil or MMF) to azathioprine (standard care) as a long-term treatment for lupus nephritis. The Phase III study results released by Vifor Pharma and Roche convincingly reached the primary endpoint of delaying treatment failure in patients with lupus nephritis who had successfully responded to induction therapy.

Responding to the release of data of the Aspreva Lupus Maintenance Study (ALMS), Sandra C. Raymond, President and CEO of the Lupus Foundation of America issued the following statement:

The results of this study provide more good news for the estimated 1.5 million Americans and the more than five million people worldwide who are living with lupus. Previous studies have provided convincing evidence that CellCept is better tolerated, and, more importantly to patients and their doctors, is associated with few serious or life-threatening infections and hospitalizations. It has been more than 51 years since the last drug was approved for lupus. We are greatly encouraged that people with lupus nephritis and their physicians will have additional options available to treat this potentially life-threatening and disabling complication of lupus.

The results of the study are significant because as many as forty percent of people with lupus will experience lupus kidney disease. The results of this study offer hope for an improved quality of life for these individuals. We look forward to reviewing data from the study when the company presents more details at the upcoming Ninth International Congress on Lupus, June 24-27 in Vancouver, Canada.

The Lupus Foundation of America is the nation’s foremost national voluntary health organization dedicated to finding the causes of and cure for lupus and providing support, services and hope to all people affected by lupus. The LFA conducts programs of research, education and advocacy through a national network of chapters, branches, and support groups. For more information about lupus, visit the LFA website at www.lupus.org or call 800-558-0121 to receive a free information packet about lupus.

"Borderline Positive for Lupus" – What Does That Mean? - 06/02/2010 02:26 PM

During a recent interview on Larry King Live on CNN, singer Lady Gaga stated that she tested borderline positive for lupus but that, as of right now, she does not have lupus. But some have asked us, just what does “borderline positive” mean?

No single laboratory test can determine whether a person has lupus.

The anti-nuclear antibody (ANA) test is used as a screening test for lupus. We know that 95 percent of people with lupus have a positive ANA. Therefore, if a person has symptoms of systemic lupus but their ANA test is negative, that's generally regarded as pretty good evidence against lupus being the explanation for the symptoms they are having.

On the other hand, if the ANA test comes back positive, that IS NOT proof of lupus. The positive ANA is only an indicator; it is not diagnostic. A positive ANA can be found in a number of illnesses and conditions. In fact, many people may have positive lupus tests-particularly the anti-nuclear antibody test-and yet they do NOT have the disease.

All lab tests have normal values. If a test result comes back and the value is at the upper limit of normal, this is often referred to as being on the border or borderline. These results are often very difficult to interpret; and the assessment of its importance is dependent on meeting other criterion.

A variety of laboratory tests are used to detect physical changes or conditions in the body that can occur with lupus. Each test result adds more information to the body of evidence that a doctor uses to determine if a person has lupus. However, lupus cannot be diagnosed solely on lab work. A lupus diagnosis is made by a careful review of:

•    a person’s current symptoms,
•    laboratory test results,
•    medical history, and
•    the medical history of close family members (grandparents, parents, brothers and sisters, aunts, uncles, cousins).

For more information about lupus, visit the LFA website at www.lupus.org

Only Four Days Remain To Make Your Voice Heard and Spread Awareness of Lupus - 05/28/2010 12:20 PM

As summer approaches, Lupus Awareness Month comes to a close. You all have been incredible in spreading our awareness message this May! Not only did the Band Together for Lupus petition surpass our goals twice, we saw signatures from 70 countries and all 50 states from the United States. In addition, supporters such as yourself raised awareness through walks, wearing our wrist bands, and posting our facts on facebook and twitter. The LFA thanks you for all of your efforts.

Let us know what you have been doing during Lupus Awareness Month and read about others’ efforts.

Why not continue the momentum during these last few days of May?

Send out 10 e-cards to spread the message

Sign and encourage others to sign our Band Together for Lupus Petition.

Wear a purple wristband

Share the Daily Lupus Fact with Friends and Family – Visit our Daily Fact Archive

Make a donation to fund research, advocacy, and education efforts

Guest Blogger Dr. Meenakshi Jolly Talks about Banding Together to Improve Quality of Life in Lupus - 05/26/2010 11:28 AM

Over the past nine years, I have learnt from my teachers and colleagues, but I must say that I have learnt the most from my patients. We still don’t know everything about lupus. There are true gaps in our knowledge, and some are our oversights. True gaps are the holes in our knowledge that exist despite our rigorous search for answers. However, there are some gaps because we did not ask all the questions.

What am I talking about? What brought you to see your lupus doctor? Was it something you had difficulty doing, or were unable to do? Something that was important to your day to day living. May be it was pain that limited you from doing what you needed to do or enjoyed. What is it that is most valuable to you as a patient? Getting back to your usual state before your lupus, or getting as close to that usual state as possible? I am referring to your “Quality of life”.

We all realize it is important to look at your blood and urine tests to assess your lupus, and in adjusting your lupus medicines. But now we realize the importance of knowing how YOUR lupus is affecting YOU and YOUR quality of life in UNITS that you can understand and compare over time.

Lupus affects your lives in so many different ways. We are in the process of learning more about the ways lupus affects your quality of life and ways in which we can include and measure your viewpoint.

BANDING TOGETHER therefore is very important for lupus at four levels:
a) Banding together of different specialties of doctors providing care for lupus, so we can all work together towards this goal.
b) Banding together of lupus doctors with their patients. This is very important so we can both learn from each other and set treatment goals from your point of view.
c) Banding together of lupus patients. Seeing others with lupus, listening or talking to them may help you cope with your disease.
d) Banding together of doctors, patients and the community. This is important so that diagnosis can be made early by appropriate recognition of symptoms and timely referrals.

I hope that YOU will find your way to band together for lupus and thus work towards improving your quality of life.

Meenakshi Jolly, MD

Director, Rush Lupus Clinic
Assistant Professor of Medicine
Rheumatology Section, Dept. Of Medicine &
Department of Behavioral Medicine
Rush University Medical Center

Center for Clinical Trials Education Adds Lupus Registry - 05/24/2010 12:00 PM

The LFA’s Center for Clinical Trial Education (CCTE) has expanded its services to provide registered participants notification of studies in their area. Sign up for the Lupus Research Registry and be notified of studies in your area that are actively recruiting participants. When an investigator alerts the LFA of a study, the LFA will send an email alert to registered individuals who live in areas that correspond to study sites. Registration is free and confidential.

Q&A for Sean Harahan, Your Expert on Staying Active Despite Lupus, Now Available - 05/19/2010 03:31 PM

For May, the LFA invited you to join us for the "Staying Active Despite Lupus" Q&A with guest expert Sean Hanrahan. This was your opportunity to ask questions and learn from an expert.

Read Sean Hanrahan's Q&A.

Read previous transcripts here.

Entertainment, Government, and Industry Leaders Shine Light on Lupus at the Lupus Foundation of America’s National Butterfly Gala - 05/18/2010 11:22 AM

More than 600 people turned out tonight for the Lupus Foundation of America’s (LFA) National Butterfly Gala, which recognized Ted Turner, Chairman, Turner Enterprises, Inc., Senator, Daniel K. Inouye (HI), Human Genome Sciences and GlaxoSmithKline for their contributions to advancing the science and medicine of lupus, and supporting the millions of people around the world affected by lupus.

During the Butterfly Gala, the LFA and singer/songwriter Julian Lennon announced the establishment of The Lucy Vodden Research Grant Award. The research initiative is named after Lucy Vodden, Julian’s childhood friend who lost her battle with lupus in September of 2009 at the age of 46. Lucy was the subject of a drawing that Julian created which inspired his father to write the classic Beatles song, “Lucy in the Sky with Diamonds.”

Dr. Gary Gilkeson, Medical University of South Carolina and Chair, LFA’s Medical-Scientific Advisory Council, and Julian Lennon presented the award to Lucy Vodden’s husband, Ross Vodden, and her sister, Fran O’Donnell.

Throughout the evening, the LFA recognized each of the honorees for their unique contributions to overcoming this serious and life-threatening illness. Larry King, host of CNN’s Larry King Live, delivered a special congratulatory video message to honoree Ted Turner, who received The Cooper Family Foundation Leadership Award for his long-standing interest in and support of lupus research, and lifetime of philanthropic works.

Senator Daniel K. Inouye (HI), Chairman, Senate Committee on Appropriations, received the National Leadership in Biomedical Research Award for his leadership in advancing federal research at the National Institutes of Health, the Department of Defense, and other federal institutions, for better treatments and a cure for lupus.

Human Genome Sciences (HGS) and GlaxoSmithKline (GSK) were recognized with the Corporate Leadership in Lupus Award for their commitment to and innovation in lupus research, resulting in two positive phase III clinical trials for a potential new lupus treatment. H. Thomas Watkins, President and Chief Executive Officer, HGS, and Peter Hare, Vice President, Immunology Business Unit, GSK, accepted the awards on behalf of the companies.

“On behalf of the LFA, I would like to congratulate all of our honorees,” said Sandra C. Raymond, President and CEO of the Lupus Foundation of America. “I know each of the honorees will continue to bring national attention and resources to lupus and play a significant role in helping us to usher in a new era in lupus, as we build upon the recent progress we’ve seen over the past year.”

Julian Lennon and singer/songwriter James Scott Cook also treated the crowd to a special performance of the tribute song “Lucy.” Last year, Julian Lennon and James Scott Cook released the song “Lucy” in honor of Lucy Vodden. Proceeds from the song “Lucy” will support The Lucy Vodden Research Grant Award. The grant will fund lupus research through the LFA’s National Research Program, Bringing Down the Barriers, which is part of the LFA’s ongoing commitment to advancing the science and medicine of lupus and finding a cure.

CNN Anchor and Special Correspondent Soledad O’Brien served as the Master of Ceremonies for the evening. Other notable guests and presenters included Congressman James P. Moran (D-VA, 8th); LFA Board member Dr. Annette Shelby; Congressman Chris Van Hollen (D-MD, 8th); Elliott Sigal, M.D. Ph.D., Executive Vice President, Chief Scientific Officer and President, Research & Development, Bristol-Myers Squibb Company; Carol Ann Petren, Executive Vice President and General Counsel, CIGNA Corporation and LFA Board member; Kalenna of the musical group DirtyMoney; and LFA National Spokespersons Mercedes Yvette, Tomiko Fraser Hines, and Kelly Jean Drury.

About Lupus
Lupus is an acute and chronic autoimmune disease in which the immune system is unbalanced, causing inflammation and tissue damage to virtually any organ in the body. Lupus can be unpredictable and potentially fatal, yet no satisfactory treatment or cure exists. An estimated 1.5 million Americans and at least five million people worldwide have a form of lupus. Its health effects include heart attacks, strokes, seizures, miscarriages, and organ failure.

About the LFA
The LFA is the nation’s foremost nonprofit voluntary health organization dedicated to finding the causes of and cure for lupus, and providing support, services, and hope to all people affected by lupus. The LFA and its network of chapters, branches, and support groups conduct programs of research, education, and advocacy.

LFA Message Boards Continue to Grow, Active and Supportive Community - 05/16/2010 12:03 PM

As the LFA Message Boards edge toward 6,500 registered users, we would like to take this opportunity to thank the members of our online community for your support and active participation. These message boards provide an opportunity for individuals with lupus to support one another and exchange information. The information can be especially helpful to someone who is newly diagnosed. We hope you will continue to support these boards.

Rumors that the message boards are being discontinued are inaccurate. The LFA has no plans to discontinue offering message boards through its website. In fact, we continue to explore ways to expand the message boards and offer more interactive features.

Thank you for being an active participant in this dynamic and supportive online community.

New Survey Finds 22 Percent of Women 18-44 Report Hearing More about Lupus Since Launch of the Ad Council National Lupus Public Awareness Campaign - 05/14/2010 10:17 AM

(May 5, 2010 – Washington, DC) The Ad Council and the U.S. Department of Health and Human Services Office on Women’s Health (OWH) announced today that 22 percent of women ages 18-44 reported hearing more about lupus within the past year, according to a national online survey released by the two organizations. An additional 15 percent of women in this age group also reported they have heard, seen or read something about lupus, a 50 percent rise in awareness from a year ago when only 10 percent reported a lupus media placement.

Since the campaign was launched in March 2009, it has generated $27-million in donated media (public service announcements), and another $4-million in earned media (news coverage). Read the release issued by the Ad Council. The Lupus Foundation of America is the Founding Partner with OWH on the campaign.

The Ad Council also announced distribution of a new radio public service announcement to stations in bothEnglish and in Spanish, and redistribution of the television PSA’s to TV stations and cable outlets to secure additional placements.

Please contact Duane Peters or Maggie Maloney at the national office if you need assistance or have questions regarding the Ad Council’s national lupus public awareness campaign.

World Lupus Day is May 10th and the LFA is working to raise awareness of lupus and the impact the disease has on at least 5 million people around the world who are living with a form of lupus. Our Band Together for Lupus™ Petition pledges to raise awareness and has over 8,000 signatures, represented by 57 different countries.

Various lupus groups from all over the world, from Argentina to Spain, are participating in World Lupus Day. For example, Lupus UK passed out posters to all of their members and asked them to each text ten people with an awareness message. You can join in the effort as well. Send ten World Lupus Day eCards today.

To learn more, please visit http://www.worldlupusday.org/. How will you raise awareness today?

Recognize Your Mom This Mother's Day -- Make an Honorary Donation in Her Name! - 05/07/2010 09:32 AM

A donation in the name of that special woman in your life -- your mom -- not only shows how much you love her, but it’s also a way to bring hope to individuals and families affected by lupus!

Your gift to the Lupus Foundation of America is a heart-warming way to honor a caring, compassionate woman, while helping to fund research for a cure. Help support moms everywhere who are living with lupus.

You did it! In just 5 days 5,000 people pledged their commitment to raise awareness of lupus! Let’s continue the momentum. Help us reach 10,000 signatures in 2 weeks!

The response has been incredible! People from around the world are taking the pledge - including Spain, Argentina, Mexico, Afghanistan, UK, Peru, Argentina, Australia, Portugal, etc. – to do at least one thing this month to raise awareness of lupus.

If you haven’t already signed the petition, join the band and spread the word.

Share what you are doing to raise awareness of lupus. Have your awareness efforts posted to LFA’s Lupus Awareness Month – Awareness Actions Page.

Meet Sean Hanrahan, Your Expert on "Staying Active Despite Lupus," for the May 2010 Q&A - 05/03/2010 08:29 AM

Just like everyone else, people with lupus need to exercise regularly or engage in some kind of movement, and most people with lupus can take part in some form of activity with the knowledge and support of their doctor. For May, the LFA invites you to join us for the "Staying Active Despite Lupus" Q&A with guest expert Sean Hanrahan. This is your opportunity to ask questions and learn from an expert.

Learn more about the "Staying Active Despite Lupus" Q&A.

Submit your questions by May 7.

Read previous transcripts here.

Are You in the Band? Join us for Lupus Awareness Month - 04/30/2010 03:20 PM

It’s estimated that 80 percent of the public know little or nothing about lupus. A shocking statistic when you consider the impact lupus has on the lives of 1.5 million Americans and more than five million people worldwide. We hope you’ll join us and Band Together for Lupus to raise awareness and educate others about lupus this May during Lupus Awareness Month.

More education and awareness of lupus can lead to earlier diagnosis, more resources to help those affected by lupus, and more dollars to fund lupus research. But we can’t do it alone; that’s why we need to work together. Just think of the impact we could make if everyone with a connection to lupus informed 10 people about the disease! Are you in the band?

Learn ways in which you can raise lupus awareness.

Create a Page of Hope to Honor or Remember Someone with Lupus, or to Fundraise - 04/26/2010 07:50 AM

Honor someone special in the quest for a cure for lupus. Or, celebrate a special event such as your anniversary, wedding, birthday, or turn your run, walk or other activity into a fundraiser for the LFA. It's easy to raise funds to find the causes and the cure for lupus by creating a Page of Hope -- a secure, personal fundraising tool that allows you to create your own fundraising webpage, customized with your photos and your personal message.

You can easily customize and build a Page of Hope, then invite family and friends to visit and give in honor or in memory of someone in lieu of giving or getting gifts. It’s a powerful way to make a difference and give a message of Hope.

Create a Page of Hope today.

If you are like most people with lupus, you have experienced pain at some time, especially in your joints and muscles, or in the form of headaches. However, the types of pain associated with lupus usually go away when the inflammation and disease activity are brought under control.

Learn some approaches to pain relief.

And we'd love to hear from you. What works for you?

Guest Blogger Dr. Barbara Segal talks about what is abnormal fatigue, and what can be done about it - 04/21/2010 08:27 AM

Fatigue that is often severe, persistent and disabling is a common problem for lupus patients. A sense of exhaustion which interferes with normal functioning is an experience that affects as many as 70% of people with lupus. We all appreciate that illness of many types is associated with extreme tiredness. Fatigue is frequently the first symptom of common illnesses such as viral infection.

Distressingly, in lupus, often the tiredness persists even when the disease is “under control,” a fact that has led many researchers to conclude that disease activity has little or nothing to do with the cause of the fatigue. Yet paradoxically, many patients report that the first symptom of a flare is a worsening or relapse of fatigue. Despite extensive research, many questions remain about the biology of fatigue.

One of the reasons that progress in understanding abnormal fatigue has been slow is that fatigue, like pain, is complex and subjective and therefore a challenge for researchers to describe and measure. Fatigue has physical (needing to rest, weakness), emotional (decreased interest, low motivation) and cognitive aspects (for example: problems with concentration). The physical and emotional impact of fatigue is not the same for each individual and can be present to varying degrees in the same person at different times. Also, the words used to describe fatigue such as tiredness, sleepiness, and exhaustion mean different things to different people.

Clearly, fatigue is very challenging problem and multiple factors potentially contribute. Not surprisingly poor sleep is a major factor. Two thirds of patients with SLE report poor sleep quality. Low mood, pain, lack of exercise and medications all contribute to the high prevalence of fatigue in autoimmune disorders. A comprehensive evaluation to address each one of these issues is a good place to start in turning the fatigue problem into a symptom that is manageable and not disabling.

Fatigue, Depression and Sleep Disorder

Both fatigue and pain are strongly associated with depression in patients with autoimmune disorders including SLE. Depression is particularly frequent in the first year after lupus is diagnosed when medications and inflammatory processes, as well as the challenges of coping with a serious unpredictable illness, can be overwhelming. People with depression typically experience decreased energy along with changes in appetite, memory problems, slow thinking, difficulty with attention, feelings of sadness and loss, and pessimistic thoughts.

Medication to treat depression is often very helpful in treating both the low mood and accompanying changes in appetite, energy and sleep. When daytime tiredness persists even in the absence of depression, poor sleep quality is often a major factor. Sleep disturbance can also be related to many different problems. When pain interferes with sleep, whether the cause is nerve damage, joint inflammation or fibromyalgia , appropriate treatment of the underlying cause is essential.

Sorting out the Cause

Fatigue that follows even minimal activity is frequently associated with deconditioning. Whether decreased physical fitness is the cause or the result of abnormal fatigue, a conditioning exercise program designed to gradually improve fitness is safe and effective in treating fatigue in SLE. Depression is often associated with fatigue that is present throughout the day and is not relieved by sleep or rest. The fatigue is typically severe in the morning, which is also the case when fibromyalgia is present. In fibromyalgia sufferers, patients are likely to awaken feeling unrefreshed, tired or exhausted.

As many as 20% of SLE patients are also experiencing the symptoms of fibromyalgia: widespread muscle pain that is not associated with tissue damage and diffuse tenderness. Because the pain in fibromyalgia is thought to be due to abnormal sensory pain processing, treatment with anti-inflammatory and narcotic analgesics is usually not effective, whereas pain medications that act specifically on pain pathways that are dysregulated may be beneficial. If treatment of depression or fibromyalgia is not helpful in improving poor sleep quality, a formal evaluation to determine whether there is a specific sleep disorder interfering with normal sleep patterns, such as obstructed airway or restless leg syndrome, can be useful. Delay in falling asleep can also be helped by exercising early in the day, avoiding alcoholic beverages after dinner and a establishing a relaxing gradual process of winding down before bedtime.

Unraveling the mystery of fatigue: the way forward

More effective treatments for fatigue are likely to be linked to the discovery of novel lupus biomarkers. Biomarkers can be any one of several types of measurable quantities that reflect the biology of a disease process and relate to the mechanism of the disease. Research is this area has been very exciting. A good example is the discovery that up-regulation of the interferon gene pathway is characteristic of lupus and Sjogren’s syndrome as well as several other autoimmune disorders.

The interferon gene signature is a fingerprint for severe SLE that is more likely to be detected in patients with serious organ involvement (especially kidney and brain) and when disease is very active. Within the central nervous system, inflammatory molecules regulated by interferon play a role in causing symptoms that we associate with illness including decreased appetite, fatigue and abnormal sleep as well as depression. Other potential biomarkers for fatigue include genetic fingerprints (DNA and RNA messages within cells that are identifiable with modern technologies of molecular biology) and imaging techniques, such as nonconventional protocols for high resolution brain magnetic resonance imaging.

So far, while the results are preliminary and require further study, there are some clues that suggest that disruption in normal signaling between brain cells involved in monitoring stress and pain may contribute to fatigue in individuals with autoimmune disease. Another line of recent research suggests that increased oxidative stress and possibly mitochondrial dysfunction could play a role in causing fatigue in lupus as well as fibromyalgia and chronic fatigue syndrome. Future studies combining both high resolution brain imaging and molecular techniques capable of measuring abnormal proteins could provide answers to the mystery of the origin of fatigue. New insights into the two-way relationships between the immune system and the brain will shed more light on the origin of abnormal pain and fatigue. In the meantime a model that takes into account the complex physical and psychological aspects is the starting point for tailor-made therapeutic help.

You can learn more about fatigue on lupus.org.

Dr. Barbara Segal
Hennepin County Medical Center
Minneapolis, Minnesota

Q&A for Dr. Robert Katz, Your Lupus Expert on Understanding Lupus, Now Available - 04/19/2010 07:39 AM

For April, the LFA invited you to join us for the "Understanding Lupus: Open Forum for Questions" Q&A with guest expert Dr. Robert Katz. This was your opportunity to ask questions and learn from an expert.

Read Dr. Katz's Q&A.

Read previous transcripts here.

Practical Tips for Living with Sjögren’s and Raynaud’s - 04/16/2010 07:33 AM

Two overlapping conditions known to many with lupus are Sjögren’s syndrome and Raynaud’s disease, also known as Raynaud’s phenomenon.

Sjögren’s syndrome affects the body’s ability to produce moisture in the glands of the eyes, nose, and mouth. Raynaud’s disease causes narrowing of the blood vessels, which most commonly affects the fingers and toes. When blood can’t get to the surface of the skin, the affected areas turn white and blue.

Here are some practical dos and don’ts to living with these diseases.

Taken from the Spring 2010 issue of Lupus Now magazine

All LFA Walkers / Fans of the LFA … Meet LFA CEO, Sandra C. Raymond - 04/13/2010 02:09 PM

Join us for a special teleconference with the President and CEO of the Lupus Foundation of America (LFA), Sandra C. Raymond, on Thursday, April 15th from 7:00 – 8:00 p.m. EST.

During this call you will learn about what is new in lupus research, as well as the progress that is being made in the areas of advocacy and increasing public awareness of lupus. Sandra will speak about LFA’s role in the advances on these issues that benefit all those whose lives are affected by lupus.

To RSVP, email walk@lupus.org, or leave a message containing your name, phone number and email address (if applicable) at 877-910-9779.

Dial-in information will be provided after a reservation is made.

Good morning everyone:

Last month, I shared a great resource with you -- prescription medication assistance programs. I received a lot of positive feedback about that, and it got me thinking. What other resources can I highlight for people who are living with lupus?

And then I realized there's a very basic one -- how does one find a rheumatologist? As you may know, the rheumatologist is recognized as the specialist who diagnoses and treats lupus. There are several ways to find a rheumatologist.

Contact your nearest chapter of the Lupus Foundation of America. The chapter can provide a list of physicians in their service area who diagnose and treat lupus.

Contact your local County Medical Society (listed in your phone book) and ask for a list of physicians in your area.

Visit the American College of Rheumatology's website to find a geographical listing of rheumatologists.

Time Out: Learn how to find balance in your work, home, and social life - 04/09/2010 08:31 AM

By any standard, Tiffany Williams, 26, has a demanding schedule. A senior assistant editor with John Wiley and Sons, she also volunteers with Big Brothers Big Sisters and the American Cancer Society, is active in her church, and sings professionally. Last fall she was involved in an off-Broadway play, and in January, she began teaching an after-school music program. "All my life I’ve been the ‘go-to’ person," says Williams, of Perth Amboy, NJ. "People could call me at the drop of a hat, and I’d be there."

Though Williams loves her busy life, she had to learn to be careful about saying "yes" to things, especially after she was diagnosed with lupus at age 19. "As a young African American woman, my expectations for myself are really high. But when you have lupus, it takes so much more energy to do something that the person next to you can just do." The desire to push herself meant that her health suffered. "I went through a phase of saying, ‘Yes, yes, yes,’ and my blood pressure went up, and I’d take extra pills," she says. "One time my body got so tired that I came home hysterically crying."

Learning how to manage your time effectively, and how to say "no," is a difficult but necessary part of managing lupus.

Taken from the Spring 2010 issue of Lupus Now magazine

Ninth International Lupus Congress to take Place in Vancouver, Canada in June 2010 - 04/07/2010 07:27 AM

The International SLE Congress is a triennial meeting in which patients, physicians and researchers come together to share the latest developments in lupus. The next International Lupus Congress will be held June 24-27, 2010 in Vancouver, Canada. The event's activities will include simultaneous 3-day professional and patient education symposia featuring presentations from more than 60 of the world's top lupus research and outreach experts, and a gala Congress dinner.

The LFA is a major sponsor of the meeting, helping to lead the Patient Education Conference held in conjunction with the meeting, presenting a poster, and participating as a speaker in a symposium. People with lupus are welcomed and encouraged to attend the patient education portion of the program.

Learn more about the 9th International Lupus Congress.

Read the Latest in Lupus Research: Earlier Steroid Treatment In Pediatric Lupus Patients Is Related to Higher Risk of Bone Disease - 04/05/2010 07:47 AM

Steroids are frequently used to treat moderate-to-severe lupus flares because they are highly effective and work quickly. However, steroids have many serious side effects, including potentially severe damage to joints or “osteonecrosis,” which is an interruption of the blood supply to the bone. The researchers hoped to learn whether starting steroids at a younger age is a risk factor for osteonecrosis. The results of this study suggest the possibility that steroids might contribute to a serious bone complication in some children with lupus.

Get the details.

Seeking Parents of Children and Teens with Lupus Nephritis - 04/01/2010 07:51 AM

Is your child or teenager being treated for lupus nephritis?

The Lupus Foundation of America (LFA) Education & Research department is gathering information on the short- and long-term side effects and quality of life issues related to lupus nephritis medications -- for example, fertility concerns, hair loss, missing school, or increased risk of infections.

If you would be willing to complete a short survey about how lupus nephritis medications have affected your family and your child with lupus, please email Jenny Palter at palter@lupus.org. Once the survey has been posted online (by next week), Jenny will send you the link.

Your participation will be a great help in the LFA's efforts to assist pediatric rheumatologists in developing best treatment protocols for our young people with lupus nephritis.

Thank you!

Meet Dr. Bob Katz, Your Lupus Expert for the April 2010 Q&A - 03/31/2010 07:44 AM

The Lupus Foundation of America (LFA) has revised how it handles webchats. The new format -- now in the form of a Q&A, and no longer a "live" chat -- will still feature the nation's leading experts in lupus.

The LFA invites you to join us for the "Understanding Lupus: An Open Forum for Questions" Q&A with guest expert Dr. Bob Katz. This is your opportunity to ask questions and learn from an expert.

Learn more about the "Understanding Lupus: An Open Forum for Questions" Q&A.

Submit your lupus-related questions by April 6.

Transcripts from previous chats.

Dr. Katz's responses to your questions will be posted to lupus.org by April 15.

Read the Latest in Lupus Research: Low Level of Vitamin D Does Not Necessarily Result in Bone Disease in People With Lupus - 03/29/2010 08:07 AM

People with lupus are advised to avoid the sun because the ultraviolet rays can trigger rashes. Some patients experience more widespread flares after sun exposure. However, sun avoidance leads to low levels of vitamin D in the body. Low levels of vitamin D are associated with thinning of the bones, or "osteoporosis." The researchers wanted to know about possible relationships between vitamin D levels in the blood, lupus treatments, and bone mineral density (BMD), a measurement of how thick bones are. The results of this study showed that people with lupus who are treated with steroids are at increased risk of having low levels of vitamin D. Although reduced levels of vitamin D are known to be directly linked to osteoporosis, this study did not show that connection.

Get the details.

Lupus Foundation of America Creates 2010 Advocacy Day Video - 03/26/2010 07:56 AM

On March 16, 2010, the need to bridge the gaps in lupus research and understanding was communicated by lupus advocates through close to 2,000 emails and personal visits to Members of Congress and their staff during the Lupus Foundation of America’s (LFA) Twelfth Annual Advocacy Day.

In this video created by the LFA, lupus advocates from around the country describe their experiences at the LFA's 2010 Advocacy Day on Capitol Hill.

If you are unable to watch the video here, you can watch it here.

Read the Latest in Lupus Research: Urine May Help Track Kidney Disease and Predict Treatment Success in People With Lupus - 03/24/2010 07:49 AM

Lupus nephritis (LN) -- inflammation of the kidney -- can damage the kidney’s ability to remove waste from the body. Currently, the best way to diagnose kidney inflammation is with a biopsy, an invasive procedure that can sometimes have serious side effects. Researchers have been working to develop specific tests that can be done on urine samples. The results of this study showed that levels of mRNA for FOXP3 could potentially become a test that can be done on simple urine samples to help figure out what is going on in the kidney and to help predict responses to current treatments for people with lupus.

Get the details.

Guest Blogger Kesha Dan Talks about Her Experience at LFA's 2010 Advocacy Day - 03/22/2010 02:13 PM

I never would have thought that I would feel so blessed in just a few short days. I did not know what to expect when I was invited to attend the LFA’s Advocacy Day 2010. I will honestly say now that it was the best experience I have ever had. I flew in from Denver and was so tired when I got off the plane, but excited to see my fellow lupies & to be in DC.

I went to register for Advocacy Day, and was greeted by two great familiar faces which was a highlight for me. I was immediately relieved when I walked in the lunch that was provided by the LFA. I am a social person who loves to meet others. I met so many others who are able to share so many of the daily struggles that I also deal with, and I know that I will always keep in touch with them. This bonding process was incredible.

The day was great with training for us to be prepared for Capitol Hill and the evening with more guest speakers was even better. My highlight of the night came at around 10:30 p.m. when the alarm at the L’Enfant Plaza Hotel went off and I walked down 15 flights of stairs out in the rain with a sweat suit & dress shoes on. All of us out in the grass with the rain were a sight to see!! I still giggle about this!!!

I will admit that I was very nervous about my meetings on Capitol Hill, and how they were going to go. I can honestly say that it was one of the most exciting experiences I have ever had. We presented each staff representative with an informational folder and a lupus bracelet for them to band together with us. Everyone greeted us with smiles. We informed them about the lupus facts and I told them my personal story, which touched each of them. It was amazing because only I can tell my story and they were willing to listen. This kept me at my comfort level, so explaining why we need their support for more funding for education and awareness programs was a piece of cake. We need it, so asking for it is the easy part. Even if it takes a few more years for us to reach our goals ... just to know that I had a hand in asking & sharing my personal story meant more to me than anything. I look forward to attending next year.

I am now taking the time out to thank each & every staff member at the Lupus Foundation of America for being the strength for those of us with lupus. The LFA puts together some amazing events to help with our continued fight. My heart is content knowing that we are supported.

Kesha Dan
A fighter with lupus “Smiling Everyday”

Photo: Kesha Dan, lupus advocate from Denver, Colorado, on Capitol Hill for the LFA's 2010 Advocacy Day

Reminder: Support the Online Portion of LFA's Advocacy Day thru Friday, March 19 - 03/18/2010 07:50 AM

The LFA needs you to make your voice heard!

Through Friday, March 19, we're asking everyone to go online to the LFA's advocacy action center located at http://www.capwiz.com/lfa, and you'll see a section called "Action Alert." Click on the link called "Take Action."

Then, you’ll enter your zip code, which will then bring you to a window which displays a pre-populated email addressed to YOUR elected officials. If you want, you can modify the email to share your personal story. When you've completed your message, click "send message" at the bottom, and that's it.

Please ask your family, friends and co-workers to take just a few moments to also email / speak to their Members of Congress, and tell them why additional funding for lupus research is so important.

Together, we can change the future of those affected by lupus.

Band Together for Lupus on Tuesday, March 16 -- Make Your Voice Heard on Capitol Hill - 03/15/2010 08:30 PM

Tomorrow, March 16 is the LFA’s 12th Annual Advocacy Day on Capitol Hill.

Hundreds of lupus advocates from around the country have come together to educate Members of Congress about lupus, and encourage them to support increased federal funding for lupus research, awareness, and health care provider education programs.

Even if you cannot physically join us on Capitol Hill on Tuesday, you can still support the LFA’s efforts on the 16th – and do it from the comfort of your home.

Make Your Voice Heard

Simply go online to the LFA's advocacy action center located at http://www.capwiz.com/lfa, and you'll see a section called "Action Alert." Click on the link called "Take Action." Then, you’ll enter your zip code, which will then bring you to a window which displays a pre-populated email addressed to YOUR elected officials. If you want, you can modify the email to share your personal story. When you've completed your message, click "send message" at the bottom, and that's it.

Please ask your family, friends and co-workers to take just a few moments to also speak to their Members of Congress, and tell them why additional funding for lupus research is so important.

The link to the LFA’s advocacy action center again is http://www.capwiz.com/lfa.

Together, we can change the future of those affected by lupus. Thank you and we look forward to an amazing day on Capitol Hill on Tuesday, March 16.

Participate in the LFA’s Advocacy Day on Tuesday, March 16 – from the Comfort of Your Home - 03/12/2010 09:47 AM

As you have no doubt heard, LFA’s 12th Annual Advocacy Day on Capitol Hill is Tuesday, March 16. Hundreds of lupus advocates from around the country will come together on Capitol Hill to educate Members of Congress about lupus, and encourage them to support increased federal funding for lupus research, awareness, and health care provider education programs.

Even if you cannot physically join us on Capitol Hill on Tuesday, you can still support the LFA’s efforts on the 16th – and do it from the comfort of your home.

Here’s what you can do from home.

Everything you need to know about doing one – or more – of those 3 options above is now available on the LFA’s Advocacy Day landing page.

Remember, we really need you to make your voices heard on Tuesday the 16th.

Good morning everyone:

One of the things I often hear as the online / social media lead for the Lupus Foundation of America (LFA) is that there are so many people who have trouble with their prescription medications. Either people are unable to pay for their medications because of the cost, or perhaps they don't have prescription drug coverage. Maybe they're not even insured.

I want to share that the LFA can help. There are lots of prescription medication assistance programs out there. And the LFA has compiled a list of them -- and their contact information -- for you.

Learn more about the prescription medication assistance programs available to you.

Read the Latest in Lupus Research: An Early Study of a New Treatment (Tocilizumab) for Lupus - 03/08/2010 07:43 AM

Interleukin-6 (IL-6) is a protein that helps to control inflammation in the body. Lupus patients sometimes have increased IL-6 in the blood, and some studies suggest that IL-6 might go up with lupus flares. If the activity of IL-6 could be blocked, it might help to decrease inflammation.

What did the researchers learn?

Can Blood Tests Help Us Learn about CNS Lupus (Lupus and the Brain)? - 03/05/2010 07:29 AM

Some people with lupus can develop mild or, more rarely, severe inflammation of the brain, also called Central Nervous System lupus (CNS lupus). Very rarely, people can develop serious problems from CNS lupus such as seizures or strokes. Sometimes it is hard to know the difference between CNS lupus and problems that might be due to fatigue, depression, or migraine headaches. Therefore, it would be helpful to have blood tests that could tell the difference, so appropriate treatments could be given.

What did the researchers learn?

Meet Dr. Michael Madaio, Your Lupus Expert on Kidney Issues and Lupus for the March 2010 Q&A - 03/02/2010 08:29 AM

The Lupus Foundation of America (LFA) has revised how it handles webchats. The new format -- now in the form of a Q&A, and no longer a "live" chat -- will still feature the nation's leading experts in lupus.

As March is National Kidney Month, the LFA invites you to join us for the "Kidney Issues and Lupus" Q&A with guest expert Dr. Michael Madaio. This is your opportunity to ask questions and learn from an expert.

Learn more about the kidney issues and lupus Q&A.

Submit your kidney-related question by March 9.

Transcripts from previous chats.

Dr. Madaio's responses to your questions will be posted to lupus.org in mid-March.

Spring 2010 Issue of Lupus Now Magazine ... Coming in March to a Mailbox Near You! - 02/24/2010 08:29 AM

The BIG news on the upcoming Spring 2010 issue of Lupus Now magazine is that singer-songwriters Julian Lennon (son of Beatle John Lennon) and American musician James Scott Cook are featured on the cover! These two have given their unwavering support to our lupus awareness and research efforts, and their exclusive interview can only be found in this issue of Lupus Now!

Are you wondering whether what you eat can affect lupus? Be sure to read our article on “The ABCs of Nutrition.” While we do not have a specific lupus diet to offer you, there are definitely certain foods and vitamins you need to know about.

“Think Again” looks at the invisible changes caused when lupus affects the brain. These complications can affect your ability to retain, recall, and process information. In many instances, though, the coping strategies we offer can help you find your way.

Sometimes you have to just say ‘no’! In “Time Out” you will learn how to say, “No, I’m sorry, not today,” nicely but firmly. (We recommend you start with friends or family, who will be sympathetic, before you try this out on your boss!)

You also can read about some of the exciting lupus research taking place in the U.S., and around the world. This summary of lupus-related information presented at the 2009 meeting of the American College of Rheumatology appears in the Health Care Professionals section.

And have you noticed that lupus has been in the news a lot lately? Find out where in the Foundation News section.

Subscribe online to make sure you never miss an issue!

Lupus Foundation of America Releases New Lupus Awareness Videos; Watch Kassie's Story -- A Father Shares His Loss - 02/23/2010 08:19 AM

Good morning.

The Lupus Foundation of America (LFA) has created 4 new lupus awareness videos, where people who are living with lupus share their personal stories.

In this second video, Joe McMullin discusses the loss of his daughter Kassie, due to complications of lupus shortly after she had given birth to a son.

Read the Latest in Lupus Research: Study Finds Risk Factors for Heart Disease in People With Lupus - 02/22/2010 08:22 AM

Some people with lupus seem to be at increased risk for heart disease. It would be very helpful to know about specific factors that could help to predict this risk. The researchers hoped to learn what characteristics of people living with lupus might help to predict heart disease.

What did the researchers learn?

Spring is just around the corner, and you know what that means ... it's Walk for Lupus Now season here at the Lupus Foundation of America. Monies raised from Walk for Lupus Now Walks will support lupus research, lupus education programs, and patient and family support services.

You can walk "in honor" or "in memory" of a friend or family member with lupus. Thousands of walkers will participate in nearly 70 cities across the nation to raise funds to bring an end to this life-diminishing and life-threatening disease that affects an estimated 1.5 million Americans.

Find the Walk for Lupus Now that's closest to you!

Discounted Room Rate for LFA's 2010 Advocacy Day Only Guaranteed Thru Friday, February 19 - 02/17/2010 02:24 PM

Reminder: LFA's 2010 Advocacy Day on Capitol Hill will take place March 15-16, 2010. Spaces are filling up, so make sure you register for this event soon.

Deadline Approaching for Discounted Hotel Reservations

Here's an incentive to get you to register today -- the discounted room rate for Advocacy Day is only guaranteed through Friday, February 19. You'll need to hurry as it's your last chance to get a hotel room at a cheaper price!

Book your hotel room by Friday, February 19, and save money!

Read the Latest in Lupus Research: Twin Study Suggests Environmental Factors Might Influence The Development of Lupus - 02/16/2010 09:33 AM

DNA contains the blueprints for all the proteins in the body. DNA is wound up in tight coils and when a cell wants to make a protein, these coils unravel to expose the instructions for making that protein. The degree to which DNA stays tightly coiled or loosens up is influenced by whether or not chemicals called "methyl groups" are attached to specific parts of the DNA.

The researchers hoped to find out if DNA methylation is different between twins when one twin has lupus and the other does not.

Read the research summary, as well as the original abstract.

Share Your Heart. Send an eCard this Valentine’s Day. - 02/12/2010 07:29 AM

It’s Heart Health Month, so warm a heart this Valentine’s Day by sending an eCard to someone you care about.

The Lupus Foundation of America's Valentine's Day eCards will help you spread messages of affection and friendship while helping to increase awareness of lupus.

And they're so simple to use: fill in a few fields; select an eCard design; and click send. You can even personalize your subject line, and include your own special message.

Share your heart to those living with lupus by sending your eCard today.

Learn How Lupus Can Affect Your Cardiopulmonary (Heart & Lungs) System - 02/11/2010 08:33 AM

Lupus is an autoimmune disease that can affect almost any part of your body, most often your joints, skin, kidneys, heart, lungs, blood, or brain.

Your heart, blood vessels, and lungs make up your cardiovascular/pulmonary network: "cardio" refers to the heart, "vascular" refers to the arteries, veins, and capillaries, and "pulmonary" refers to the lungs. Your blood circulates through this vast system, transporting oxygen and other elements needed for your cells and tissues to function properly. Cardiologists are the physicians who specialize in the heart. Pulmonologists are the physicians who specialize in the lungs.

February is Heart Health Month

As such, the Lupus Foundation of America would like to further educate people living with lupus about heart disease.

Heart disease is a major complication of lupus and is now a leading cause of death among people with lupus. Blood tests, chest X-rays, an electrocardiogram (EKG), or an echocardiogram may be used to find out if you have a heart condition caused by lupus.

Learn more about how lupus can affect your heart & lungs.

For Erica DeMeerleer, Valentine's Day 2002 was anything but romantic. In fact, the events of that week nearly broke her heart.

DeMeerleer, an account executive for Comcast, was 25 and involved in a two-year relationship at the time. She had moved from her hometown of Bellingham, WA, to Seattle for her work, but was trying to maintain the relationship long-distance.

"It was a period of high stress for me," DeMeerleer recalls. "I was adjusting to the new home, struggling with high rent payments, and trying to keep my relationship going." She was also coping with incredible pain, which she thought was a symptom of the rheumatoid arthritis she had been diagnosed with six years earlier.

Then came the week that shook DeMeerleer's world. "Three days before Valentine's Day, my boyfriend broke up with me. Then a few days afterward, my doctors told me I had lupus," she says.

Learning that you have lupus is always hard, but when you're single, you face an additional set of fears. You may struggle with when and how to discuss lupus with a potential partner -- and worry about how they'll react once you do. You may even wonder if you could keep up a healthy romance at all, especially when you’re feeling fatigued or self-conscious. Is it possible to look for love -- and actually find it -- while dealing with all this?

Fortunately, the answer is a resounding yes.

Read more about Lupus and "The Dating Game."

Taken from the Summer 2007 issue of Lupus Now magazine

Family life inevitably changes when a family member is diagnosed with lupus. Chores need to be redistributed, responsibilities shared, and everyone in the family must try to remain flexible. There will be emotional considerations as well.

Open communication within the family about lupus may help to allay fears and help to foster an understanding and supportive environment for all family affected by the disease.

Learn steps that your family can take together on this new journey.

Watch Videos of the Latest Lupus-Related Heart Disease Research - 02/05/2010 08:33 AM

People with lupus are at higher risk for developing heart disease than the general population. Several studies have shown that women with lupus have a 5-to-10-fold increased risk of cardiovascular disease (CVD) as compared to women who don't have lupus. In addition, African American women are three times more likely to develop lupus than Caucasian women which increases their risk of developing lupus-related CVD.

The Lupus Foundation of America (LFA) has committed significant funds to a vital and innovative research program addressing this often serious and potentially fatal consequence of lupus.

In addition to supporting this research effort, LFA has also created three videos in which doctors talk about their research, and the importance of learning more about lupus-related CVD.

In the first video, Dr. Naveed Sattar of the University of Glasgow provides some insight as to why people with lupus are at greater risk for cardiovascular disease. Dr. Sattar moderated a session at the 2009 American College of Rheumatology (ACR) Annual Scientific Meeting on this topic.

In the other videos, two LFA-supported investigators -- Dr. James C. Oates and Dr. Betty P. Tsao -- provide a brief overview of their studies.

Watch videos of the latest lupus-related heart disease research.

Updated Guidelines for Cardiovascular Health for Women - 02/03/2010 08:50 AM

You know that heart health is important, but when you’re juggling work and home life, keeping heart healthy through diet and exercise can be tough. For people with lupus, especially women, those little slips can spell big trouble.

Lupus and its treatment often create problems, says Amy Kao, M.D., M.P.H., assistant professor of medicine at the University of Pittsburgh’s Lupus Center of Excellence. "People with lupus may be more likely to be physically inactive or develop excessive weight gain from steroids," she says. "Lupus itself can cause increased cardiovascular-disease risks, such as hypertension -- especially among those with lupus nephritis."

Learn Heart-Healthy Do's and Don'ts.

Lupus Foundation of America Releases New Lupus Awareness Videos; Watch the Lupus-Related Kidney Disease Video - 02/01/2010 09:27 AM

Good morning.

The Lupus Foundation of America (LFA) has created 4 new lupus awareness videos, where people who are living with lupus share their personal stories.

In this first video, two people talk about their lupus-related kidney disease.

Baakari Wilder is a man living with lupus. He developed the disease while he was starring in a Broadway musical. Carla Vargas describes how she must undergo periodic chemotherapy treatments to manage the health effects of lupus nephritis.

Read the Latest in Lupus Research: Potential New Indicators of Lupus Being Studied in Children - 01/29/2010 07:38 AM

Since the 1970s, researchers have known that lupus patients are at risk for hardening of the arteries (“atherosclerosis”). Some of this risk may be from the increased inflammation that lupus patients have in the bloodstream over many years, but some of it is from the same reasons that hold true for everybody: especially high blood pressure, high blood glucose (sugar), or low levels of "good cholesterol."

Taken together, these risk factors are known as "metabolic syndrome," a condition that puts people at high risk for heart disease, diabetes, or both. Some of the medications that lupus patients may take can increase the likelihood that a person will develop metabolic syndrome, especially prednisone.

Cells in the body release specialized chemicals called "cytokines," molecules that carry messages between nearby cells, and some of these messages work specifically to influence body weight and how fast food is burned or whether it turns into fat. If the cytokine messengers are sent out by fat cells, they are called "adipokines." The names of some of these adipokines (fat cell messengers) are leptin, adiponectin, and ghrelin.

The researchers wanted to find out whether the amount of leptin, adiponectin, or ghrelin in children with lupus might be different than in children without lupus.

Read the rest of the research summary, as well as the original abstract.

Read the Latest in Lupus Research: People Who Have Both Lupus and Antiphospholipid Syndrome Might Have Higher Risk of Thyroid Disease - 01/27/2010 08:20 AM

The thyroid is a gland in the neck which helps the body keep order over how food and nutrients are handled and how fast people grow, gain or lose weight, how the heart beats, or how blood pressure and cholesterol levels in the blood respond to these changes.

A protein called "thyroid peroxidase" helps to modify other proteins that the thyroid produces that perform all of these functions. Some people make antibodies (immune proteins) against their own thyroid peroxidase (these are called "anti-TPO").

People with anti-TPO sometimes have an underactive thyroid; this causes weight gain, fatigue, and a tendency to feel cold when other people around you do not.

Read more >>

Read the Latest in Lupus Research: Immunosuppressants Render Flu Vaccination Less Effective in People With Lupus - 01/22/2010 07:54 AM

The immune system fights off the flu in different ways. One way is by making antibodies (immune proteins) that recognize the flu virus and attack it. Another way is by activating certain white blood cells to fight the virus; this is called "cell-mediated immunity." Since cell-mediated responses to the influenza vaccine also influence how well the vaccine will work, it is important to understand how lupus may affect the body’s cell-mediated response to the vaccine.

Read more >>

LFA Collaborates with Federal Agencies and the U.S. Surgeon General's Office to Expand Medical Education on Lupus - 01/19/2010 09:30 AM

Representatives from the Lupus Foundation of America (LFA), along with 22 national organizations, attended the first consortium meeting aimed at developing a national health care provider education initiative to improve lupus diagnosis, treatment, and management among minorities. The meeting, held at the American College of Rheumatology offices in Atlanta, Georgia from January 12–14, 2010, was facilitated by the U.S. Department of Health and Human Services’ Office on Women’s Health (OWH), and Office of Minority Health (OMH).

According to an LFA survey, a person waits on average three years and visits four doctors before receiving an accurate diagnosis of lupus. More than 90 percent of people with lupus are women, and it is two to three times more common among African Americans, Hispanics, Asian Americans, and Native Americans. Physician and health care provider education is critical to improving the early diagnosis and management of lupus, and ultimately preventing the life-threatening consequences of the disease, particularly among those most at-risk for the disease.

An estimated $1.6 million is available for the initiative entitled, "Eliminating Disparities in Lupus Through Education and Training for Health Professionals" (EDLET/HP), which ultimately seeks to expand and promote the utilization of more comprehensive lupus curricula in medical and nursing schools, and among health care professionals and professional associations.

It is estimated that 80 percent of Americans know little or nothing about lupus. For far too long there have been limited resources to address the patient, public, and professional education gaps in lupus. In part, the first-ever Ad Council public awareness campaign on lupus sponsored by the OWH launched last year began to address the long-standing need to raise awareness and close the gap. The LFA is the Founding Partner on the campaign, "Could I Have Lupus?" which is directed at those most at-risk for developing the disease, and urges individuals who may be experiencing symptoms to ask their doctor about lupus. The EDLET/HP initiative is the health care professional counterpart to the Ad Council campaign.

"The LFA commends the Office of Minority Health and Office on Women’s Health for the foresight in developing these initiatives," said Sandra C. Raymond, LFA President and CEO. "We also want to thank lupus advocates across the United States for bringing to Congressional attention the urgent need for comprehensive patient, public, and professional education programs on lupus."

This year, the LFA will be hosting its seventh annual Advocacy Day program in Washington, DC from March 15-16, 2010. It is an opportunity for individuals to educate Members of Congress about lupus, and encourage them to support more funding for lupus research and education programs. To learn more Advocacy Day or to register, visit www.lupus.org/advocacyday.

Almost everywhere you look, there are signs telling you to exercise -- from infomercials featuring swimsuit models to newspaper articles about the risks of being a couch potato.

Sorting through the myriad of exercise options can be daunting for anyone. But it can be especially daunting for people with systemic lupus -- many of whom experience joint pain, fatigue, fevers and other symptoms.

For all the hype, there is solid evidence that our bodies need exercise to thrive.

Here’s some advice on integrating exercise successfully into your everyday life.

Taken from the Lupus Now archive

Read the Latest in Lupus Research: Belimumab Effectively Treats Lupus Flares Over a Four-Year Period - 01/13/2010 08:52 AM

Belimumab (also known as Benlysta™) is currently being studied in Phase III clinical trials to determine whether or not it is effective for lupus. Belimumab specifically reduces the actions of a protein called “B lymphocyte stimulator,” or BLyS. BLyS is a protein that increases the lifespan and inflammatory potential of certain immune cells called B cells, which are known to be hyperactive in lupus patients. Belimumab, which interferes with BLyS, is a human antibody. This means that it looks a lot like the antibodies that the immune system makes to fight off viruses. But in this case, belimumab targets only the protein BLyS. Because it only has one target, it is called a "monoclonal" antibody.

Read more >>

Registration for LFA's 2010 Advocacy Day on Capitol Hill Now Open - 01/11/2010 08:01 AM

Want to help generate more funds for lupus research and awareness?

The Lupus Foundation of America's Advocacy Day is an annual event where lupus advocates come together on Capitol Hill to educate Members of Congress about lupus, and encourage them to support more funding for lupus research.

Join lupus advocates in Washington, DC, Monday and Tuesday, March 15-16, 2010, as we introduce the Lupus Foundation of America's advocacy priorities for FY2011.

Register for the LFA's 2010 Advocacy Day today.

Guest Blogger Wendy Rodgers Talks about Her Rose Parade Experience - 01/08/2010 10:34 AM

I opened 2010 with an amazing experience as a Donate Life Float Rider. There were several days of events that led up to our ride through Pasadena, and each one touched my heart. We arrived to celebrate at an opening orientation and dinner which also allowed each of us to share our story. I immediately realized that I was among people who truly knew the value of life and how we must often overcome some insurmountable obstacles to keep going. A highlight of this event was meeting Gary Foxen, a lung recipient, who simply wrote a letter about bringing awareness to organ, eye, & tissue donation. This was the catalyst for our float. I also had the opportunity to meet Sunny Luna, another lupus survivor, who was left in need of a kidney because of the disease.

The next day, I had the honor to help decorate the float and help prepare for the float's 1st judging. There is such meticulous work that goes into the float's design & creation. I couldn't believe how such a glorious piece of art is produced from the simplest, most natural materials. That night we enjoyed a wonderful reception and gala and performance by All-4-One.

The day before the parade was the "dress rehearsal" for the parade and the final float judging. This was a magnificent moment because we finally saw the float in its final form. We were seated in our assigned places, silence fell, and the music was cued. We smiled and waved while the judges circled, and it was at this moment that we shed tears of joy. As tears ran down my face, I felt nothing but gratitude for being alive, and I was inspired to continue my journey.

It was a ride unlike one I had ever experienced because I saw that people saw the importance of the gift of life. Despite having my life torn apart by lupus and waiting nine years for a kidney, I was honored to be an example that we can still rise and go on with life.

Best wishes for a happy and healthy New Year.

Wendy

Lupus Foundation of America Awards New Research Funding to Address Issues Critical to Lupus Patients - 01/06/2010 09:09 AM

Research areas include management of the disease in children and teens, improving health outcomes, underlying genetic causes of male lupus, facilitating greater accuracy in the diagnosis of lupus

The Lupus Foundation of America, Inc. (LFA) announced new funding for research grants to address issues of critical importance for people with lupus, including the management of the disease in children and teens, improving health outcomes, the underlying genetic causes of male lupus, facilitating greater accuracy in the diagnosis of lupus, and the development of new, safe, and effective treatments. In addition, the LFA awarded five student fellowships to foster an interest in lupus research, and renewed funding for the Lupus Biomarkers Clinical Consortium, a collaborative initiative that seeks to identify biomarkers that hold promise to facilitate the diagnosis and treatment of lupus.

The LFA National Research Program, Bringing Down the Barriers, is unique because it not only funds basic and clinical research, but also focuses on areas that have been inadequately funded by the federal government, industry, or other organizations. The LFA is the only national organization to focus on pediatric research through its Michael Jon Barlin Pediatric Research Program, which was established with the generous support of the Wallace H. Coulter Foundation in memory of Michael Jon Barlin, who passed away in 2006 at the age of 24 following a long battle with lupus. Other areas of study currently or previously supported by the LFA’s National Research Program include epidemiology, cardiovascular disease, novel pilot approaches, and adult stem cell transplantation.

“More than ever before, this year’s research studies funded through LFA’s National Research Program hold the potential to have an immediate and direct impact on patients and their quality of life,” said Sandra C. Raymond, LFA President and CEO. “For example, the LFA is funding the development of a tool that seeks to ultimately improve the self-management skills of children with lupus, which will aid in their transition to adults, and lead to overall better management of the disease.”

Read the list of the 2010 LFA National Research Program Awards.

Read the Latest in Lupus Research: Belimumab Reduces Lupus Flares in a Phase III Clinical Trial - 01/04/2010 07:51 AM

Belimumab (also known as Benlysta™) is being studied in Phase III clinical trials to see whether it might be effective for lupus. Belimumab specifically inhibits a protein called B lymphocyte stimulator, or BLyS, which increases the survival and activity of immune cells called B cells, which are known to be hyperactive in lupus. Belimumab is a human antibody, which looks very similar to the antibodies made by the immune system to protect people from infections. Most antibodies made during infections have varying structures so they can target different parts of a virus or bacteria. Belimumab only targets BLyS, so it is called a "monoclonal" antibody. Belimumab is in a class of treatments called monoclonal antibodies in which the cleverness of the human immune system has been used as the inspiration for the way a new biologic drug is constructed.

Read more >>

2009: A Year of Many Firsts in Efforts to Overcome Lupus - 12/31/2009 07:53 AM

Achievements in Research, Education and Advocacy Cause for Celebration and Hope

The year 2009 will be remembered as a year of many firsts for lupus, including the first successful phase III clinical trial of a potential new treatment for lupus, the launch of the first-ever Ad Council public awareness campaign for lupus, and the first comprehensive report on the barriers to lupus drug development. And it appears there are no signs of any slowing of momentum as we enter the New Year.

Advances during 2009 in basic and clinical research on lupus hold promise for a greatly improved quality of life for the 1.5 million Americans and the more than five million individuals worldwide who are living with lupus. Two pivotal studies of BENLYSTA™ (belimumab) reached their primary endpoints that should enable the drug to become the first new treatment approved for lupus in more than a half-century. In addition, several studies published during 2009 provided new clues into the underlying causes of lupus and how the disease affects people of different genders, ages, races and ethnicities. In June, the Lewin Group issued a report commissioned by the Lupus Foundation of America (LFA) on barriers to lupus drug development. The report’s recommendations provide a roadmap to the further development and approval of a full arsenal of new, more tolerable and effective treatments for lupus.

Continued Growth in Awareness and Public Support for Lupus

Awareness of lupus further grew in 2009 with the launch in March by the Ad Council of a national public awareness campaign that targets individuals at greatest risk for development lupus. In addition, musicians Julian Lennon and James Scott Cook released a new digital single, "LUCY," that helped to bring greater worldwide attention to lupus and generate funds to support lupus research.

The United States Congress expanded its support for lupus by greatly increasing funding for the National Lupus Patient Registry, and providing new funding for a national health provider education program to improve early diagnosis and treatment of lupus and reduce health disparities. In addition, Congress appropriated additional funding to support lupus research through the National Institutes of Health and the Department of Defense’s Peer Reviewed Medical Research Program.

These achievements were the result of the combined efforts of the Lupus Foundation of America and its national network of chapters and support groups, scientists and clinicians, industry representatives, congressional champions and leaders of federal agencies, countless lupus advocates and other volunteers, donors, and individuals with lupus and their families who have dedicated their energies to address this urgent health problem. While momentum had been building throughout the past decade, the historic events of 2009 provided solid evidence that we have entered a new era of discovery and hope in the search for the causes of and cure for lupus.

The LFA has compiled a list of ten significant accomplishments, including several firsts, in efforts to overcome lupus and its impact on individuals and families.

1. First Successful Completion of a Phase III Clinical Study of a potential New Treatment for Lupus

Human Genome Sciences (HGS) and GlaxoSmithKline (GSK) announced positive results from BLISS-52 and BLISS-76, two large-scale phase III clinical trials of BENLYSTA™ (belimumab) for treating systemic lupus. Both trials succeeded in meeting their primary endpoints, which should make BENLYSTA eligible for approval by the U.S. Food and Drug Administration (FDA). Upon approval, BENLYSTA would be the first-ever treatment developed specifically for lupus, and the first new FDA-approved drug for lupus in more than 50 years.

2. Ad Council Launches its First-Ever National Public Awareness Campaign on Lupus

The Ad Council launched its first national multi-media public awareness campaign for lupus. Sponsored by the U.S. Department of Health and Human Services’ Office on Women’s Health (OWH), the campaign aimed to reach individuals most at risk for developing lupus -- young women of childbearing age, especially African American, Asian, and Hispanic women. The Lupus Foundation of America was the Founding Partner with OWH on the campaign that is expected to generate $30 million annually in donated media exposure for lupus.

3. First Comprehensive Study to Address Barriers to Lupus Drug Development

The Lewin Group issued a report following a 9-month study commissioned by the LFA that included recommendations to overcome barriers that have obstructed lupus drug development. The LFA immediately began implementing the recommendations by launching the first-ever Collective Data Analysis Initiative (CDAI). The project will examine data from previous lupus clinical trials to learn the impact that background therapies may have had on trial outcomes and use that knowledge to improve the design of future trials of potential new therapies for lupus.

4. First-Ever Consensus Definition of Lupus Flares Reached by 120 International Lupus Experts

The LFA addressed a significant barrier to advancing the science and medicine of lupus by securing consensus on a definition of lupus flares. The Lupus Foundation of America Flare Definition (LFA-FLARE) was developed through a rigorous three-year process that involved more than 120 global lupus experts. Once validated, the LFA-FLARE is likely to be used mainly as a primary or secondary outcome for clinical trials, to assist in establishing entry criteria for certain clinical trial designs, and may be useful for managing lupus.

5. Scientists Gain Clues on the Underlying Causes and Triggers for Lupus

Researchers identified a gene linked to lupus, interleukin-1 receptor-associated kinase 1 (IRAK1). Its location on the X chromosome may help explain why females are 10 times more susceptible to the disease than males. Scientists also found that people whose vitamin D tests showed low levels of the nutrient had higher levels of lupus antibodies. The study suggests that a vitamin D deficiency could serve as a catalyst to developing lupus in people who are genetically predisposed to the disease.

6. Congress Funds New and Continuing Lupus Research

In 2009, Congress provided $4 million to support the National Lupus Patient Registry, as part of a broader national epidemiological study on lupus, and $1 million for a national health provider education program to improve early diagnosis and treatment of lupus and reduce health disparities. Congress also continued to support lupus research through the Department of Defense’s Peer Reviewed Medical Research Program, which last year provided an additional $1.4 million for a study of lupus biomarkers.

7. New Companies Entered the Lupus Market and New Studies Planned to Develop More Tolerable and Effective Treatments for Lupus

Pharmaceutical and biotechnology companies continued to expand efforts during 2009 to develop and test potential new treatments for lupus. UCB and Immunomedics announced positive phase IIb study results for epratuzumab, ImmuPharma released promising findings from a final phase IIb study of Lupuzor™, and Genentech presented encouraging data from a phase I study of rontalizumab. In addition, approximately twenty clinical studies were underway at the end of 2009 to test possible new therapies for lupus.

8. LFA Awards New Research Funding to Address Issues Critical to Lupus Patients

The LFA awarded new funding for research grants to address issues of critical importance for people with lupus, including the management of the disease in children and teens, improving health outcomes, the underlying genetic causes of male lupus, facilitating greater accuracy in the diagnosis of lupus, and the development of new, safe, and effective treatments. In addition, the LFA awarded five student fellowships to foster an interest in lupus research, and renewed funding for the Lupus Biomarkers Clinical Consortium, a collaborative initiative that seeks to identify biomarkers that hold promise to facilitate the diagnosis and treatment of lupus. In all, the LFA supported the work of 13 lupus investigators in 2009.

9. A Growing Number of Lupus Studies Presented at World’s Largest Scientific Meeting for Rheumatologists

Building momentum for scientific discovery in lupus was evident when more than 260 abstracts of research studies related to lupus were presented during the 75th Annual Scientific Meeting of the American College of Rheumatology in Philadelphia during October. The LFA produced video highlights of more than 20 significant studies. The videos are available at www.lupus.org/acr. During the conference, LFA officials also met with the Foundation’s medical and corporate advisors to discuss the future direction of research on lupus and to review recommendations from an important new report on barriers to lupus drug development.

10. Lupus Enters Popular Culture and Awareness Increases as LFA Expands its Presence on the Net

As part of its Patient Voices series, The New York Times website featured the stories of people from across the country who are affected by lupus. The LFA further expanded its presence on YouTube, Facebook and Twitter to engage a new online audience in advocacy and public awareness. To highlight the need for safer, more tolerable, and effective medications, the LFA launched Band Together for Lupus, that asks people to wear an LFA purple wristband until there is a medication approved by the FDA specifically for lupus. Musicians Julian Lennon and James Scott Cook released the digital single, "LUCY," with proceeds going to support lupus research, generating more than a quarter million views to LFA’s YouTube page.

Read the Latest in Lupus Research: Urine Components May Indicate Severity of Lupus Nephritis - 12/29/2009 09:36 AM

Lupus may involve inflammation of the kidney, called lupus nephritis, which can impair the kidney’s ability to remove waste from the body. Since normal kidney function is vital, lupus nephritis requires aggressive treatments. Currently, the best way to diagnose kidney inflammation is with a biopsy, which is an invasive procedure that can sometimes have serious side effects. If there were tests that could be done to help diagnose and evaluate lupus nephritis without a biopsy, this would be a major advance for patients.

Read more.

Whether you spend the winter hibernating inside or braving the chill of the great outdoors, chances are your skin is suffering during the coldest months of the year. For people with lupus who may already be dealing with photosensitivity, skin rashes or lesions, and side effects from medication, winter's freezing temperatures, low humidity, and wind exposure just make things worse. It's no surprise that people find themselves battling dry, cracked skin and "winter itch."

Learn how to best protect your skin.

Taken from the Fall 2008 issue of Lupus Now magazine.

Scheduled Maintenance for Message Boards on Tuesday, December 22 - 12/18/2009 10:52 AM

Please be advised that FuseTalk (our message boards host) will be performing scheduled maintenance in our hosting environment during the time period noted below:

Tuesday, December 22, 2009 9:30 PM EDT to Tuesday, December 22, 2009, 10:30 PM EDT

This maintenance involves hardware upgrades that were not completed in the previous maintenance window. As such, the message boards may not be accessible during this time frame.

Download LUCY from iTunes and Support Finding a Cure for Lupus - 12/15/2009 02:37 PM

Musicians James Scott Cook and Julian Lennon are doing their part in the search for a cure for Lupus. For both men – this is personal. James’ 92-year-old grandmother, Lucy Cook, has lived with lupus for many years, and Julian’s childhood friend, Lucy Vodden, recently passed away at the age of 46 after a long battle with the disease.

You may already have heard the story that one day four-year old Julian brought home a watercolor painting of his friend and classmate, Lucy Vodden. Julian told his dad that the drawing was “Lucy in the Sky with Diamonds” which inspired his father, the legendary John Lennon, to write one of his most famous songs of the same name.

To honor both of these women James and Julian have partnered to release the song, “LUCY.” A portion of the proceeds will be donated equally to the Lupus Foundation of America and the St. Thomas Lupus Trust in Great Britain to support lupus research.

Download LUCY Today!

From now until March 15, 2010, 100 percent of the proceeds from each download of the “LUCY” from iTunes will be donated to lupus research. Don't have iTunes on your computer? Download the software here.

Let’s keep the momentum going!

Help us spread the word and invite others to support raising awareness of and funds for lupus research. By taking just a few minutes you can honor someone in your life who lives with lupus, just like James and Julian are doing.

Send an e-card (up to 10 per day) to your friends and family, and ask them to join you and “band together” to support lupus research by downloading “LUCY” from iTunes.

Learn More

Learn more about the story behind LUCY on the LFA website.

Your Voices Were Heard!

Thanks to you, Congress has heard how important lupus funding is to their constituents! On Sunday, December 13, 2009, Congress passed the Omnibus Appropriations bill for Fiscal Year 2010. In this bill there is:

The National Lupus Patient Registry is the most comprehensive epidemiological study on lupus to date which will determine the true national incidence and prevalence of lupus among all populations, as well as uncovering the burden of the disease on individuals, families and society. To date, the NLPR program has received $12.1 million which has been used to create four study sites in California, Georgia, Michigan, New York, and the Indian Health Service.

This bill will now be sent to the President for his signature. On behalf of the Lupus Foundation of America and people with lupus, thank you for making your voices heard!

If you are interested in making your voice heard in person for Fiscal Year 2011 lupus priorities, please join with us on Capitol Hill March 15-16, 2010 for the Lupus Foundation of America’s Advocacy Day! The LFA Annual Advocacy Day provides lupus advocates from across the nation the opportunity to participate in meetings with the offices of their U.S. Senators and Representatives to educate policy makers about lupus and discuss public policies that have an impact on people with lupus. Registration will open in January 2010.

Come to the Lupus Foundation of America’s 2010 Advocacy Day March 15-16! - 12/11/2009 09:28 AM

Join with the Lupus Foundation of America (LFA), people with lupus and their friends and family for the LFA’s 2010 Advocacy Day. The LFA Annual Advocacy Day provides lupus advocates from across the nation the opportunity to participate in meetings with their U.S. Senators and Representatives to educate policy makers about lupus and discuss public policies that impact people with lupus.

The LFA’s 2010 Advocacy Day Program will begin on March 15th with a training session and dinner at the L'Enfant Plaza Hotel to meet other people who have been touched by lupus and discuss the LFA’s Advocacy Message.

On March 16th, we will travel to Capitol Hill to meet with Members of Congress and inform them about our legislative priorities and share our personal stories about lupus.

The weeks between Halloween and New Year's Eve are exciting and hectic, full of celebrations and extra errands. But if you suffer from headaches, this time of year can also mean more pain. According to a 2006 survey by the National Headache Foundation, 52 percent of respondents experienced an increase in frequency and severity of their headaches during holidays -- bad news for people with lupus, for whom headaches are a common symptom.

Determining whether your headaches are lupus-related can be difficult. Pain might indicate central nervous system involvement, but it might also result from a new treatment, disrupted dietary and sleep patterns, or stress from extra responsibility.

Learn more about headaches, and ways in which you can lessen the severity and frequency of your headaches.

This holiday season, please consider giving the Gift of Hope. Any gift you make to the Lupus Foundation of America will help support life-saving research and life-enhancing services to patients and families. Thanks to you, all people affected by the devastating disease of lupus will begin the new year with renewed hope for better treatments and ultimately, a cure!

There are several ways to give a Gift of Hope. They include: making a donation in someone's memory or in someone's honor, giving a gift subscription to Lupus Now magazine, or giving a gift from one of our cause marketing partners (Schwan's, Carol's Daughter, SuperJeweler.com and Tirana Jewelry).

LFA's Medication Webchat to be Held Wednesday, December 9 at 3 p.m. Eastern - 12/02/2009 11:45 AM

Reminder -- the Lupus Foundation of America's next webchat is Wednesday afternoon, December 9, at 3 p.m. Eastern Time.

The LFA welcomes Dr. Graciela S. Alarcón, who will serve as the guest expert for the "Medication" webchat.

This is your opportunity to ask questions and learn from an expert. Dr. Alarcón is currently the Jane Knight Lowe Chair of Medicine in Rheumatology. She joined the Division of Clinical Immunology and Rheumatology at UAB in 1980 as a Research Fellow under the sponsorship of the American College of Physicians after having spent seven plus years as a Faculty member at Universidad Peruana Cayetano Heredia in Lima, Perú. While in Perú she developed and organized the first Rheumatology Unit and the first clinical training program in Rheumatology. During her UAB fellowship she received a Traveling Award and a Senior Rheumatology Fellows Award, both from the American College of Rheumatology. In 1981 she joined the Faculty, ascending rapidly through the ranks; she became a professor in 1988, an endowed professor in 1998 and an endowed chair in 2001.

You can submit a question in advance here.

We hope you can join us Wednesday afternoon, December 9. To do so, you can log in to the live chat here.

As always, copies of all chat transcripts are posted online within a day or 2 of the chat. Follow this link to read LFA's previous chat transcripts.

Julian Lennon and James Scott Cook Raise Awareness and Funds for Lupus Research - 11/30/2009 08:19 AM

Proceeds from the song, “LUCY,” will be donated to the Lupus Foundation of America and the St. Thomas Lupus Trust

Julian Lennon, son of the legendary John Lennon, and James Scott Cook announced today that they will donate a portion of the proceeds from their song, “LUCY,” to fund research on the disease lupus. The song was created to honor Cook’s 92-year-old grandmother, Lucy Cook, who has been living with lupus for years and Lucy Vodden, a childhood friend of Lennon’s who recently passed away at the age of 46 after a long battle with lupus. Vodden was also the subject of a drawing that Julian created which inspired his father to write the memorable Beatles hit song “Lucy in the Sky with Diamonds.” Proceeds donated from the song, “LUCY,” will be shared equally by the Lupus Foundation of America, Inc. (LFA), and the St. Thomas Lupus Trust in London.

Sandra C. Raymond, LFA President and CEO, issued the following statement:

"We thank Julian Lennon and James Scott Cook for their generous support, which will not only help fund lupus research, but will also go a long way to help raise awareness and draw international attention to this perilous disease. All proceeds from the song will be restricted for use in LFA’s National Lupus Research Program, Bringing Down the Barriers, which directs grants to lupus researchers in academic medical centers throughout the United States for research on the causes and epidemiology of lupus, pediatric lupus, lupus kidney disease, cardiovascular disease in lupus, adult stem cell transplantation, novel approaches to the development of new treatments, among other areas.

"We applaud Julian and James for calling attention to the urgent need for lupus research. It has been more than 50 years since the U.S. Food and Drug Administration (FDA) approved a new treatment for lupus. In fact, to date there has never been a drug approved specifically for lupus, since the disease was discovered more than a century ago. Physicians who treat people with lupus often must rely on medications that have toxic side effects; some side effects are worse than the disease itself. For people with lupus, finding less toxic therapies is vital to not just their quality of life, but for many, their survival.

"Lucy Vodden and Lucy Cook represent people with lupus around the world who are either living with lupus, or have succumbed to the disease, demonstrating the varied and sometimes devastating impact that lupus can have on individuals and their families. This life altering disease typically strikes young women in their childbearing years, yet a public opinion survey demonstrated that 80 percent of women know little or nothing about the disease.

"Our hope is that the efforts of Julian and James will inspire others, and serve as a catalyst for the public to join us in working to change the future for the millions of people around the world like Lucy. We encourage people to pay tribute to both of these women and all those living with lupus by downloading the song ‘LUCY’ through iTunes beginning December 15, 2009."

Related Information

Julian Lennon, decade later, back in music biz with 'Lucy'

Good morning everyone.

It's been a while since I did a lupus blog spotlight, so I thought I would this morning. I want to share this blog with you. It is called My Life Works Today!

Here's a little bit about Maria, a blogger living in Oregon who runs this site.

"The mission of My Life Works Today! is to inspire individuals who are living with all forms of lupus and lupus-related illnesses ... by being a strong resource of opportunities reflecting the potential and well-being of our Oregon and SW Washington communities.

"As a means of supporting individuals to succeed in their wellness management, we designed this project to offer focused educational workshops, supportive resources and a social network made up of other local individuals who are also committed to designing their own self-care. By utilizing the abundance of information already present through the internet, written media, existing programs and the participants themselves, MLWT gathers this information and creates a learning satellite community for individuals to draw inspiration from.

"We also offer information, discussion groups and presentations for the others in our lives such as family, friends, employers and co-workers so that they may gain a much clearer understanding of what they can do to provide us the support we need to be successful. Self-reliance is important and strengthening our networks, in turn, strengthens us and our healing capacities."

If you have some time, swing by My Life Works Today! and say hi.

LFA Releases Video Series on the Latest Lupus Research - 11/19/2009 08:48 AM

The Lupus Foundation of America (LFA) joined more than 11,000 rheumatologists and allied health professionals at the American College of Rheumatology's (ACR) 2009 Annual Scientific Meeting in Philadelphia, Pennsylvania in mid-October. The program included more than 260 abstracts, plenary or special session presentations specifically about lupus.

Representatives of the LFA attended the meeting to report on new developments in basic, clinical, translational, and epidemiological research on lupus. More than 20 key lupus researchers and scientists sat down with LFA officials to talk about the research data they presented. Those on-camera interviews, and a summary of selected research abstracts, are now available to view.

* About the ACR Annual Scientific Meeting
* Treatments for Lupus
* Complications of Lupus
* Management of Lupus
* Causes of and Progression of Lupus
* Pregnancy and Lupus

LFA's Medication Adherence Webchat to be Held Monday, November 23 at 3 p.m. Eastern - 11/16/2009 08:13 AM

Reminder -- the Lupus Foundation of America's webchat is next Monday afternoon, November 23, at 3 p.m. Eastern Time.

The LFA welcomes Dr. Sam Lim, who will serve as the guest expert for the "Medication Adherence" webchat.

This is your opportunity to ask questions and learn from an expert. Dr. Lim is Assistant Professor of Medicine at Emory University School of Medicine in Atlanta, Georgia and Chief of Rheumatology at Grady Health Systems. He heads two large lupus clinics and is involved in several federal, state, and privately funded projects, including the CDC-funded Georgia Lupus Registry (part of the National Patient Lupus Registries). He also serves on the Medical Scientific Advisory Committee of the Lupus Foundation of America and its Georgia Chapter.

You can submit a question in advance here.

We hope you can join us Monday afternoon, November 23. To do so, you can log in to the live chat here.

As always, copies of all chat transcripts are posted online within a day or 2 of the chat. Follow this link to read LFA's previous chat transcripts.

Save the Date: LFA's Lupus Advocacy Day on Capitol Hill to be Held March 15-16, 2010 - 11/13/2009 07:42 AM

The LFA Annual Advocacy Day provides lupus advocates from across the nation the opportunity to participate in meetings with their U.S. Senators and Representatives to educate policy makers on lupus and discuss public policies that affect people with lupus.

L’Enfant Plaza Hotel, in downtown Washington DC, will be our headquarters hotel. More details will be coming soon.

Participate in the BENLYSTA Research Update Call on Monday, November 30, 2009 - 11/11/2009 07:59 AM

The Lupus Foundation of America (LFA) invites those living with lupus and interested in learning more about the results of the BENLYSTA studies to join us for a special Webinar on Monday, November 30, 2009 at 7 p.m. EST.

LFA’s Medical Director, Dr. Joan Merrill, will review the results of the BENLYSTA studies and answer questions. Questions can be submitted in advance.

Please note that space at the event is limited. The LFA will provide a summary of the discussion following the event for those who are unable to attend.

Call In Details

1. Dial the Conference Access Number: 212-401-6760 or 866-551-3680
2. Enter your Participant PIN Code followed by the # key: 7292757#
3. You will be placed on musical hold until the Event begins
4. To join the Web Conference click this link: https://www.anywhereconference.com/?Conference=130257715&PIN=7292757
5. Enter your Name
6. Click Go

Or Join the Web Conference Manually

1. To join the Web Conference log into: https://www.anywhereconference.com/
2. Enter the Web Login Reference: 130257715
3. Enter the PIN Code: 7292757
4. Enter your Name
5. Click Go

The LFA is consulting with the Centers for Disease Control and Prevention (CDC), as well as our National Medical-Scientific Advisory Council, on the possible impact of this virus on people with lupus. The Lupus Foundation of America (LFA) is aware of the concern that people with lupus may have about the recent outbreak of the H1N1 (Swine) Flu.

Get the latest update on H1N1 and Seasonal Flu Vaccines.

MicroRNA’s Role in Interferon’s Contribution to Inflammation - 11/06/2009 08:20 AM

Interferons (IFNs) are proteins produced by immune cells when the immune system is activated. They send different instructions to cells depending on the needs of the immune response; this can lead to cells making certain inflammatory proteins. IFNs communicate with the cells by linking up with receptor proteins along the cell surface, the way a key fits into a lock. This action sends a signal into the cell that eventually either turns on or turns off the process we recognize as inflammation.

There are a number of signals and switches along the communication pathways that control inflammation, leading to the production of interferons and the ways in which interferons communicate with inflammatory cells. A group of very small substances called micro-RNA (miRNA) are thought to help in the regulation of inflammation in several ways. One way may be by interfering in the process by which genes (the genetic blueprint for the body) are translated into actual proteins (the machinery of the body).

Read more.

LFA's Social Wellness, Making Connections and Helping Others Understand Lupus Webchat to be Held Wednesday, November 11 at 3 p.m. Eastern - 11/04/2009 09:00 AM

Reminder -- the Lupus Foundation of America's webchat is next Wednesday afternoon, November 11, at 3 p.m. Eastern Time.

The LFA welcomes Ms. Cindy Coney, who will serve as the guest expert for the "Social Wellness, Making Connections and Helping Others Understand What You Go through with Lupus" webchat.

This is your opportunity to ask questions and learn from an expert. Ms. Coney is a nationally recognized speaker and educator. She holds a Master’s Degree in Educational Leadership and is a Certified Prevention Professional. For over 25 years, Cindy led a non-profit agency which developed health and prevention programs. Under her leadership, the agency grew from a locally based non-profit to a nationally recognized organization. The programs received the highest designation possible by the federal government and were implemented in more than 3,500 school systems across the country.

You can submit a question in advance here.

We hope you can join us Wednesday afternoon, November 11. To do so, you can log in to the live chat here.

As always, copies of all chat transcripts are posted online within a day or 2 of the chat. Follow this link to read LFA's previous chat transcripts.

Reminder: LFA is hosting a second webchat on Monday, November 23, 2009. Dr. Sam Lim will discuss Medication Adherence.

Promise of a New Lupus Treatment is a Groundbreaking Achievement - 11/02/2009 02:11 AM

Human Genome Sciences (HGS) and GlaxoSmithKline (GSK) today announced positive results from BLISS-76, the second of two large-scale phase III clinical trials of BENLYSTA™ (belimumab) for treating systemic lupus. A full presentation of results from BLISS-52 was recently shared at the 73rd Annual Scientific meeting of the American College of Rheumatology. Both trials succeeded in meeting their primary endpoints, which should make BENLYSTA eligible for approval by the U.S. Food and Drug Administration (FDA).

Both trials demonstrate that treatment with BENLYSTA plus standard of care was superior to that of placebo (inactive agent) plus standard of care. BENLYSTA significantly reduced disease activity. If approved by the FDA, BENLYSTA would be the first drug ever developed and approved specifically for the treatment of lupus.

Sandra C. Raymond, President and Chief Executive Officer of the Lupus Foundation of America (LFA) issued the following statement.

"We are truly excited to receive this groundbreaking news! Individuals with lupus and their families have waited more than 50 years to hear that it is possible to develop therapies that control the disease. We believe that this is a significant first step in developing the full arsenal of therapies and personalized treatment lupus requires.

"Conducting clinical trials in lupus has been extremely difficult due to many factors including the heterogeneity of the disease, the selection of appropriate clinical trial endpoints, and the confounding role of required background medications given to clinical trial participants. Human Genome Sciences and GlaxoSmithKline have proven that these barriers, while formidable, can be overcome.

"For decades the entire lupus research community has worked hard to better understand the causes and consequences of the disease. The fruits of that labor are starting to emerge. However, now is not the time for complacency. We must band together for lupus and continue to capitalize on the decades of research made possible through the efforts of the many dedicated researchers, physicians, people with lupus, and advocates.

"This announcement by HGS and GSK and the Overcoming Barriers to Drug Development in Lupus report, commissioned by the Lupus Foundation of America to outline recommendations on ways to overcome the barriers to lupus research, combine to serve as a call to action for a national coordinated effort to accelerate the pace of discovery, to develop more tolerable and effective treatments, and to ultimately find a cure for this perilous disease.

"We congratulate HGS and GSK on reaching this important milestone in lupus research and in the development of new therapies for lupus. We also extend our appreciation to the researchers and study volunteers who made this achievement possible: the physicians who have passionately committed to researching this disease, and the companies that continue to invest in finding new and necessary treatments for this devastating disease."

The next step in the process is for HGS and GSK to submit marketing applications in the United States, Europe and other regions during the first half of 2010. The LFA will closely follow this process, and continue to keep its constituents apprised of developments.

Nominate the Lupus Foundation of America for Best Non-Profit Use of Social Media in Mashable's 2009 Open Web Awards - 10/28/2009 12:28 PM

Mashable, in partnership with MOTOBLUR, is conducting the 3rd Annual Open Web Awards: Social Media Edition. The 2009 Open Web Awards is Mashable’s international online voting competition that covers major innovations in web technology and social media.

The Lupus Foundation of America (LFA) is participating, and would like to take the category of “Best Non-Profit Use of Social Media.” We need you and your friends and family to help us win!

How You Can Help

Once a day, every day between now and November 15, you and your family, friends, and coworkers can nominate the Lupus Foundation of America for “Best Non-Profit Use of Social Media.”

Submitting your nomination requires 4 easy steps:

Step 1: Visit http://openwebawards.com/
Step 2: Log in via Facebook or Twitter (if you have an account in both, please vote via both websites)
Step 3: Go to the first category (Brand / Startup / Company / Agency), and select “Best Non-Profit Use of Social Media” from the drop-down menu.
Step 4: Type in "Lupus Foundation of America" and Submit Your Nomination

Remember, you can vote once a day, every day, using both your Facebook and Twitter accounts.

The nominations period will last until midnight of November 15th.

The top 5 nominees in each category will then move on to the final voting round which will begin on November 18th and end on December 13th. Winners will be announced on December 15th.

Thank you for your support.

Seeking Men with Lupus 65+ Years Old to Participate in a Survey - 10/27/2009 03:23 PM

This is a follow-up to our recent posting where we asked people with lupus to participate in a survey. The response so far has been very good.

Now, BioVid has asked us to help them specifically recruit men with lupus who are 65+ years of age for this same survey. If you, or someone you know, may be a potential candidate, please follow the instructions below.

Through November 9, BioVid Corp. -- a market research firm – is conducting a survey. Specifically, they want to survey people living with lupus about their experiences with, and attitudes toward, the management of some health conditions.

Anyone living in the United States is eligible to participate. BioVid is looking for men with lupus who are 65+ years of age to take part in this survey, which will take about 45 minutes to complete. For those selected to participate in the survey, there’s a $75 stipend.

If you are interested in participating, please contact Dusten Lorenz at dlorenz@biovid.com to begin the initial screening process.

Factors That Influence Pregnancy Outcomes in Women with Lupus - 10/26/2009 07:54 AM

Although women with lupus used to be advised to avoid getting pregnant, out of fear of complications for the mother, the baby, or both, a better understanding of the complications of lupus and improved management of lupus pregnancies have resulted in improved outcomes.

Today at least 85 percent of lupus pregnancies result in live births.

However, doctors still advise women who have active lupus kidney disease (lupus nephritis, or LN) not to get pregnant until their disease has been inactive for at least six months.

Read more.

Help the LFA Win $50,000 via America’s Giving Challenge - 10/21/2009 03:46 PM

The Lupus Foundation of America (LFA) is participating in America’s Giving Challenge ... and we need you and your friends and family to help us win!

Winning $50,000 would mean so much to LFA and the people we support. That amount would fund a national research grant seeking to find the causes and a cure for lupus. As you know, the FDA has not approved a new drug for lupus in more than 50 years!

Or, if LFA won three daily challenges then we could fund an additional Gina M. Finzi Memorial Student Summer Fellowship. The Finzi Fellowship Program has supported the work of approximately 200 young investigators since it was founded in 1984.

So what exactly is this Challenge?

America’s Giving Challenge is a 30-day, national competition through Facebook that encourages people to leverage their personal networks in support of the causes that matter most to them. Awards will be given to the nonprofit causes that garner the highest number of unique daily donations between October 7, 2009, and November 6, 2009.

The Grand Prize for this Challenge is $50,000 for the organization that acquires the most donations over the competition. Additionally, daily prize awards will also be given to the cause with the highest number of unique donations on that day. (Daily awards begin at 3:00 p.m. ET and run through 2:59 p.m. ET the following day.). The maximum daily prize is $1000!

How You Can Help

For a minimum $10 donation, you can help the LFA fund research to develop a robust arsenal of safe, effective, and more tolerable treatments for this difficult to treat and devastating disease.

We have studied the winning trends and know in order to be a winner we need to have a concentrated effort and ours starts at 3 p.m. TODAY (Wednesday, October 21). Let’s focus first on being the daily winner over the next 5 days between now and 3 p.m. Monday, October 26. After that we’ll analyze the results and see what is still needed to win America’s Giving Challenge!

Support the LFA in America’s Giving Challenge Today

Remember ... the goal is to get as many unique daily donations as possible (minimum of $10) each day.

Please share this link with your family, friends and coworkers, and ask them to support this worthy cause.

Between October 19 – November 9, BioVid Corp. -- a market research firm – is conducting a survey. Specifically, they want to survey people living with lupus about their experiences with, and attitudes toward, the management of some health conditions.

Anyone living in the United States is eligible to participate. BioVid is looking for up to 100 people to take part in this survey, which will take about 45 minutes to complete. For those selected to participate in the survey, there’s a $75 stipend.

If you are interested in participating, please contact Dusten Lorenz at dlorenz@biovid.com to begin the initial screening process.

Guest Blogger Amanda Davenport Dishes on Hell's Kitchen -- Week 9 - 10/13/2009 08:27 AM

Hello all once again!

Now this week was a pretty exciting week. Several of us from this season got together and watched the show while having some good food and drinks! We had a great evening and I so look forward to doing it again soon!!

Ok. Back to this week's episode. This week's challenge was a tough one. Cooking a vegetarian dish for 80 in one hour is a lot. And then on top of that finding out that your 80 guests are children who don't like vegetables! Wow -what a way to start the day!

In the end the kids picked Tennille's dish. She got a great reward –new hair, new outfit and getting to go eat some of the best sushi ever at Nobu LA with Chef Ramsay! You can't get much better than that.

As for the others they were left behind to clean up what looked like one of the largest kids parties you have ever seen! There were never ending piles of food, milk and juice to throw away and wipe down. They also had to pick gum off the bottom of the tables. Yummy!!

Tennille may have prevailed during the challenge, but the same didn't hold true during service. Tennille is perfectly capable cooking for children, but when it came to the adults looking for a presentable and flavorful dish, she was just too inconsistent to continue on. Chef Ramsay made his decision to have Tennille leave Hell's Kitchen.

I am very pleased with who the final three are. Those are the ones that deserve to be there! I can't wait to see what happens next week with my fellow Chefs and let the best Chef win!!

So keep on watching and cheering on the final three. We are getting very close to the end!

See you soon!

Amanda

Store Spotlight: "Coping with Lupus" by Dr. Robert H. Phillips - 10/09/2009 08:05 AM

Written in a warm, engaging style, Coping with Lupus is a guide that will help you cope with the challenges of life with lupus.

Dr. Robert H. Phillips, a highly experienced psychologist and founder of The Center for Coping in Long Island, NY, wrote Coping with Lupus. The book offers useful information and practical coping strategies for dealing with the psychological aspects of chronic health problems, with chapters on coping with emotions, coping with others, and living with a spouse or child who has lupus. Dr. Phillips also discusses medical aspects of lupus: what lupus is and how it is diagnosed, medications used in treating and controlling symptoms, non-medication pain control, the importance of exercise and movement, and diet and nutrition.

Buy the book.

LFA's Work Disability / SSDI / Health Insurance Webchat to be Held Wednesday, October 14 at 3 p.m. Eastern - 10/07/2009 08:18 AM

Reminder -- the Lupus Foundation of America's Webchat is next Wednesday afternoon, October 14, at 3 p.m. Eastern Time.

The LFA welcomes Ms. Sheri Abrams, who will serve as the guest expert for the Work Disability / SSDI / Health Insurance webchat.

This is your opportunity to ask questions and learn from an expert. Ms. Abrams is a Fairfax, Virginia, Attorney dedicated to helping people with Social Security Disability Benefits issues, as well as working with people to prepare Special Needs Trusts, Wills, Living Wills, a Health Care Power of Attorney, or a Financial Power of Attorney.

Ms. Abrams has received an AV Superior Rating, the highest ranking possible in the Martindale-Hubbell Law Directory.

You can submit a question in advance here.

We hope you can join us Wednesday afternoon, October 14. To do so, you can log in to the live chat here.

As always, copies of all chat transcripts are posted online within a day or 2 of the chat. Follow this link to read the LFA's previous chat transcripts.

National Report Shines Light on Lupus 50-Year Treatment Drought - 10/05/2009 08:25 AM

Today, The Lewin Group, a national health care consulting firm, issued recommendations on ways to overcome the barriers that have obstructed lupus drug development resulting in no new drug approval for this disease in more than 50 years -- since the Eisenhower Administration. The recommendations are included in the report Overcoming Barriers to Drug Development in Lupus, which is the outcome of a 9-month study commissioned by the Lupus Foundation of America, Inc. (LFA). The recommendations highlight the need for a national collaborative and coordinated effort among key stakeholders, including the FDA, the National Institutes of Health (NIH), researchers and scientists from academia, the LFA, and industry, to implement a range of initiatives that would create a path forward to develop a robust arsenal of safe, effective, and more tolerable treatments for this difficult to treat and devastating disease.

The report provides recommendations for each of the key stakeholders, which include expanding federal support for medical research on lupus, assessing the existing standard of care used in clinical trials, examining the interpretation of regulations pertaining to clinical trial design and related standards of evidence used to evaluate investigational drugs for lupus, expediting the discovery and validation of lupus biomarkers, and more.

Read the entire press release here.

Guest Blogger Amanda Davenport Dishes on "Hell's Kitchen" -- Week 8 - 10/02/2009 11:23 AM

Hello. I am glad to be blogging with you once again. What an episode we had last night. Down to the final five! It had the best and worst of what can take place in the culinary world. You can see how each person expresses themselves in their food, and how a lack of concentration and no communication can ruin a service.

Let’s start with the challenge. This is one of the things that every chef enjoys doing. Creating a dish that is uniquely them and putting their skills to the test against other chefs. Ingredient by ingredient, layer after layer and the best presentation combined with the best flavors wins the day. In the end I can honestly say that I was not surprised that Ariel and Kevin were the ones that really shined. Chef Ramsay and Barbara Fairchild, of Bon Appétit magazine, had the challenge of deciding based on flavor who would get a photo shoot and their recipe printed in Bon Appétit. I don’t care who you are as a chef, you want to have a recipe in Bon Appétit. When all was said and done the choice was too difficult and both Kevin and Ariel won the challenge. I am so excited for those two. Job well done.

As for the rest of the crew they were treated to orange jumpsuits and a ride on a prison bus to enjoy a little manual labor outside of the kitchen. They enjoyed an afternoon of cleaning a stretch of highway that Hell’s Kitchen adopted.

As you saw, this was one of the worst services of the show, and that is tough to understand because this is the final FIVE. There was nobody that had a good service and Chef Ramsay, not being one to hold tongue, went off. It was a bad night for all. The guys decided to send Ariel and Suzanne up for elimination. You could see how this was going to end. Ariel made her debut on the block, but the fourth time was not a charm as Suzanne was sent packing.

Once again don't forget the "Band Together” campaign.

Till next week ...

Amanda

Lupus Now Magazine Seeks Interviewees for Spring 2010 Issue - 09/29/2009 07:45 AM

Good morning everyone.

We are excited about a new year of Lupus Now! But we can’t make the magazine a success without a little help from our readers and friends.

One feature article will be on cognitive functioning complications of lupus. This will not be a medical article; instead, personal experience will be the focus. If cognitive dysfunction has affected your ability to do your job, attend school, manage your household, or care for your family, we would like to hear from you.

Our first Wellness piece will look at how to promote better sleep. If your lupus has caused sleep disruption for you, we would like to know how you have faced the challenge.

Our second Wellness piece will look at personal esteem issues. We will need your tips and suggestions on coping with hair loss, skin rashes, frustrating prednisone weight gain, and other familiar features of lupus. Men, we want to hear from you, too!

If you would like to participate on an article interview, please email your name, phone number, location, and email address to lupusnow@lupus.org. Use "Spring Magazine" in the subject line. It will also be helpful if you include a little bit about your lupus and why you are responding to one of these interview requests.

On behalf of the editor of Lupus Now magazine, thanks!

Become Your Own Insurance Policy: 6 Ways To Ensure A Better Life With Lupus - 09/28/2009 09:54 AM

Jennifer MacLean felt a rush of emotions when she learned she had lupus in April 2008, after at least 10 years of seeking a diagnosis.

“I was horrified,” recalls MacLean, 42, an operating nurse from Sparta, NJ. “I was shaking in my car. So many people had dropped the ball; I felt very angry.”

Once the anger and surprise passed, however, MacLean realized she had to take steps to continue leading her life. “I had to rally, and I had to work,” she says. Her first thought was on preserving her financial stability.

“I remember thinking I needed to get disability insurance because if I couldn’t work, I would be lost financially,” MacLean says. She applied for various policies, only to be denied at every turn.

“I was told they didn’t want my money. I had lupus, and no one wanted to insure me.” But instead of giving up, MacLean decided to be proactive about her situation.

“I knew I had to do whatever was necessary to stay as healthy as possible,” she says. “I needed to be my own insurance policy.”

Take these 6 steps to begin ensuring a better life while facing the challenges of lupus.

Guest Blogger Amanda Davenport Dishes on "Hell's Kitchen" -- Week 7 - 09/25/2009 11:19 AM

This week ... thankfully there were two episodes of Hell's Kitchen. In hour one, Suzanne needs to try to find a way to work with the Blue Team, to which she was switched at the end of the last episode. The first challenge is to create three entrees out of fifteen ingredients that would be considered local to the Whistler, British Columbia area. The judges for this challenge are Olympic medalists, Sasha Cohen and Jonny Moseley who declare the Blue Team victorious.

In hour two, the six remaining contestants are presented with their black jackets and they must now work together as one team. They arrive in the kitchen for their first individual challenge, which is “Taste It, Now Make It.” They are paired up into three teams of two, and presented with one of Chef Ramsay’s signature dishes. The twosomes must recreate the dish using just the look and taste of it to guide them. In the end Dave and Suzanne are the only ones to identify the citrus juice in the sauce and they win a lunch at Gordon’s LA restaurant, Gordon Ramsay at The London West Hollywood. The losing pairs get to stay behind at the restaurant and change the dining room over to a “couple’s night” theme.

At dinner, things go from bad to worse -- between raw fish, sweat in the food, and burnt lettuce, Chef Ramsay practically has a breakdown and walks out of the building. The stunned Black Team is left to do their jobs as well as Gordon’s. When Chef Ramsay comes back, he throws Van, Ariel, and Suzanne out of the kitchen, leaving the service to be completed by Kevin, Dave, and Tennille. These three are then instructed to choose two out of the three ejected players for elimination. Sabrina got the boot in the first show and Van got kicked off in the second show.

Off topic from Hell's Kitchen -- as many of you may know, there has been no new lupus drug in more than 50 years! A new drug could be a world of greatness for all of us who suffer from this disease on a daily basis.

This is why the LFA has launched the campaign, "Band Together For Lupus," for anyone who has, or knows someone who has, lupus. We want all of you to wear the LFA purple wristband until the FDA approves a new drug for lupus!

You can find out more about this campaign, and buy your wristband, at www.lupus.org/bandtogether.

Let’s all get together and do what we can to fight this disease that has no cure "yet" ...

Until next week,
Amanda

We want you to join the band! The LFA has launched a new campaign, Band Together for Lupus?, to highlight the need for safer, more tolerable, and effective medications. We are asking people to wear an LFA purple wristband until there is a medication approved specifically for lupus by the U.S. Food and Drug Administration. It's been 50 years since the FDA approved a medication to treat lupus -- when Dwight D. Eisenhower was President! Current medications for lupus have unacceptable side effects that include bone loss and osteoporosis, infections, infertility, joint replacements, cancer, and more. Together, we can offer support to people with lupus, their loved ones, and the professional medical community who fight every day to find new treatments.

To learn more about LFA’s new campaign, and find out how you can join the “band,” visit www.lupus.org/bandtogether. Don't forget to share them with friends and family too!

The kidneys act as filters to remove waste materials from the blood; these waste materials are then passed out of the body in the urine. Lupus that affects the kidneys, termed lupus nephritis, or LN, can cause inflammation that damages the kidney tissue. If LN is not diagnosed early and treated aggressively, this tissue damage can affect the kidneys’ ability to filter waste. If the kidneys become too damaged to function properly, a person may need to undergo regular (two-three times per week) dialysis treatments, in which the blood is circulated through a machine that removes the waste material. Lupus nephritis can eventually lead to end stage renal disease (ESRD) and the need for a kidney transplant.

Read more >>

The thyroid gland makes hormones that act on many functions in the body, from how quickly cells use energy to bone development and nerve cell growth. The thyroid’s production of hormones is regulated by TSH (thyroid-stimulating hormone), which is made in the pituitary gland.

Autoimmune thyroid disease occurs when the body makes antibodies to thyroid cells. Different antibodies to the thyroid can have different effects. Some can inhibit the thyroid cells, causing an underactive thyroid (thyroiditis); others can stimulate the thyroid cells, leading to an overactive thyroid (Graves’ disease). Many of the symptoms of autoimmune thyroid disease -- fatigue, muscle pain and weakness, specific antibodies -- are also symptoms of lupus. Several studies have suggested that thyroid disease occurs more often in people with lupus than the general population.

Read more >>

Whether it's the first time or the 50th, doctors’ office visits can be stressful. For ideas on ways to make the most of your visits, we spoke to a teen with lupus, a pediatric rheumatologist, a young woman who was diagnosed with lupus in 1994, and a public health scientist and author. Here are their suggestions.

Get a Good Start

Approach the appointment with the right expectations. “People should expect to see a doctor who is caring and prepared to see them,” says Steven R. Feldman, M.D., Ph.D., professor of dermatology, pathology, and public health sciences at the Wake Forest University School of Medicine and author of Great Medical Care: The Handbook for Making Your Visit to the Doctor Better. He adds, “Start things off right by having a positive attitude.”

Read the rest of the suggestions here.

* Taken from the Fall 2009 issue of Lupus Now magazine

Fight Lupus. Be a Fundraiser. Create Your Own "Page of Hope." - 09/14/2009 09:54 AM

We've made it easy for you to create and promote your own personal fundraising pages. Honor someone special in the fight against lupus. Celebrate a special event. It's easy help raise funds to find the causes and the cure for lupus by creating a Page of Hope.

You can easily customize and build a Page of Hope, then invite family and friends to give in honor or in memory of someone in lieu of giving or getting gifts. It’s a powerful way to make a difference and give a message of Hope.

It’s easy to create a Page of Hope. Get started now.

Guest Blogger Amanda Davenport Dishes on "Hell's Kitchen" -- Week 6 - 09/11/2009 10:25 AM

Hello all. I am back with my weekly rundown of the happenings on Hell's Kitchen. This week was a tough one to follow for a couple of reasons -- not the least of which being that yours truly was not on the show. I thought this week was pretty entertaining for the most part. My girls won another challenge and the boys were on the ropes this entire episode.

I will have to start by saying that watching this week was odd for me. Seeing that Suzanne was still there when everyone wanted her out and then watching her try to be uber-nice was rough. Luckily the girls did not buy it. When I say the challenge was crepes I couldn't believe that I had the misfortune of being eliminated last week. Gordon mentioned that his time in France was a very important in his development as a chef and I can totally relate. I worked there and it is the best decision I ever made in relation to my culinary career. Crepes are not easy to make, and is not something you can teach in a couple of minutes. I would have been a big asset in the challenge. In the end the girls won the challenge and the guys were left to prep both kitchens for service.

I would not have wanted to be the guys after this loss. Prepping the kitchen is one thing, but doing it for both sides and having new ingredients that most of them have never dealt with is rough. The girls are off practicing their mime skills and dining on fois gras while the guys are trying to prep frogs legs. I think you can see the exhaustion and frustration start to set in on the guys’ faces and that leads to lack of concentration. As service went on you could start to see the wheels coming off on both teams. Suzanne and Sabrina were in way over their heads at this service. Ariel was the one that kept that service from going completely off track. She showed a lot in that service. In the end both Sabrina and Suzanne were booted out of the kitchen for the girls and Andy was booted for the guys. When it was all over neither team won the night and they were sent off to pick two to put up for elimination Ultimately poor Andy got the boot.

As for me during this time I was enjoying just relaxing and trying to recharge my body. I wish I was still competing, but my body was not hating the fact that it could sleep and exercise on my own schedule. I hope you all stay tuned because there are many surprises to come. You all keep watching and I will keep fighting. Below is another one of my favorite recipes for all of you to try out. So tell me ... what did you think of the episode?

Amanda

Amanda's Recipe: Grilled apricot glazed chicken with grilled pineapple and jalapeno salsa

2 chicken breasts seasoned with salt, pepper and olive oil. Make sure the grill is hot enough and grill the chicken on each side for approximately 10 minutes or until cooked through.
Take off grill, and brush with apricot preserves. (heat that preserves in a sauce pan for easier glazing.)

Peel the pineapple and cut into thick slices. Oil the grill so the pineapple doesn't stick. Grill on each side until you have good grill marks and carmelization.

For the salsa:

Combine all ingredients and salt and pepper to taste. Place grilled chicken on plate and top with salsa.

Serves 2 - 3.

Lupus Foundation of America's Participating in a Clinical Trial Chat Transcript Posted Online - 09/10/2009 08:44 AM

Thanks to everyone who attended the "Participating in a Clinical Trial" webchat hosted by Mr. Kenneth Getz. It went really well; lots of great questions were asked. A copy of that chat transcript has now been posted online.

And, we hope you will join us for the October 14, 2009 webchat. The topic is "Work Disability / SSDI / Health Insurance." Mark your calendars for that.

You can learn more about LFA's upcoming webchats here.

The Lupus Foundation of America (LFA) and Schwan’s Home Service recently joined forces to fund lupus research.

Schwan’s Home Service brings more than 350 delicious frozen foods right to your door, all with a 100% quality guarantee. From now until Saturday, September 19, when you place a food order at schwans.com or call 1-888-SCHWANS, use promotion code "LF" at check out. Schwan’s Home Service will donate 10% of the funds from your order back to the LFA.

Don't wait ... this offer expires Saturday, 9/19/2009!

Guest Blogger Amanda Davenport Dishes on "Hell's Kitchen" -- Week 5 - 09/04/2009 08:23 AM

Hello once again! As always, it is a pleasure to be blogging away with you guys. I hope you all had a chance to watch this week’s episode. How many of you didn't see that coming? I know I didn’t. I thought all was good for me after the service. I guess it goes to show that you can never be too sure as to what will happen in life. Let's get right into the show.

I loved the challenge we had with the guys this time. Every chef knows that the best tool, or instrument you can have is a good palette. I think mine is pretty good, but once you realize that the food you are tasting is not in its typical form, or at its normal temperature then all bets
are off. I was really proud of our team and how we performed. I felt good that when we got to me and we had a lead that I would be able to take it home. It was close, but the girls prevailed once again. The reward was awesome. I have never had dinner in total darkness. That was a trip! All you can do is try to feel your way -- a fact that Gordon became privy to first hand. Sorry Gordon!

I thought service was pretty much a dead heat between the two teams. Both sides struggled but I felt we were ahead in the game for most of the evening. Suzanne had a very rough time. She was already at odds with the team and then she just melted down in service. It happens but we all tried to make the best of it. I had a good service all in all. The exception was when Suzanne tried to lay the blame for her fish on me. In the end Gordon decided that the blue team was just slightly better. We all agreed we wanted to put up Suzanne and Sabrina based on their performance for that service. As Gordon tends to do though he decided to add to the mix, and unfortunately it was me. I didn't think there was any way I would be leaving. That would not be the case.

Even though I was surprised I was not upset. You just have to prepare yourself that it can be your night to leave no matter what happens. I know that in my mind it had a lot to do with my health and that the competition was only going to get more difficult for me physically. I hated to leave, but I was looking forward to getting the rest my body so desperately needed. I learned so much from the experience and am grateful I got the opportunity. I realize that when I am healthy I can hang with anyone in a kitchen. I would do it again in a second. I felt I could have made it to the end because I was starting to get a bit of my energy back. I really wanted to prove to myself that I could win, and when I had the lupus flare I wanted to prove to the people watching that this disease has to be taken seriously. I think I was able to do that, and I hope that came across.

I am thankful to all of you that watched and for the kind words and inspiration throughout. I will continue to chat with you until the end of the show, and hope you’ll continue to watch because you never know what surprises might take place.

Please keep watching, and as always I will keep fighting.

Amanda

LFA's "Participating in a Clinical Trial" Webchat to be Held Wednesday, September 9 at 3 p.m. Eastern - 09/02/2009 08:17 AM

Reminder -- the Lupus Foundation of America's Webchat is next Wednesday afternoon, September 9, at 3 p.m. Eastern Time.

The LFA welcomes Mr. Kenneth Getz, who will serve as the guest expert for the Participating in a Clinical Trial webchat.

This is your opportunity to ask questions and learn from an expert. Mr. Getz is the chairman of CISCRP -- a nonprofit organization that he founded to educate and raise public awareness of the clinical research enterprise -- and a Senior Research Fellow at the Tufts Center for the Study of Drug Development where he studies R&D management and operating models, investigative site, outsourcing, and study volunteer trends and policies. Ken is also the founder and former CEO of CenterWatch, a leading publisher in the clinical trials industry and one of two businesses that he has created and sold.

You can submit a question in advance here.

We hope you can join us Wednesday afternoon, September 9. To do so, you can log in to the live chat here.

As always, copies of all chat transcripts are posted online within a day or 2 of the chat. Follow this link to read the LFA's previous chat transcripts.

UCB and Immunomedics announce positive results for epratuzumab phase IIb study in systemic lupus erythematosus (SLE) - 08/31/2009 10:00 AM

UCB and Immunomedics announced on Friday top-line results from a Phase IIb clinical study which compared the effect of the drug candidate epratuzumab to placebo in people with systemic lupus. The data showed that the 12-week dose response and the dose frequency study of epratuzumab in patients with moderate to severe active lupus demonstrated a clinically meaningful treatment effect showing the drug was more effective than placebo in reducing symptoms of lupus.

“The LFA congratulates UCB and Immunomedics on the positive results from this clinical study of epratuzumab,” said Sandra C. Raymond, President & CEO of the Lupus Foundation of America. “We eagerly await the release of additional data from this mid-stage clinical study.”

“It has been 50 years since the U.S. Food and Drug Administration approved a new treatment for lupus,” said Raymond. “We are excited to see several promising new lupus therapies in the pipeline and we are encouraged that physicians may soon have new treatment options to manage this devastating and life-threatening disease.”

Read the full UCB Press Release.

Schwan’s Home Service and the Lupus Foundation of America (LFA) have teamed together to fund lupus research. When you place a food order at schwans.com or by calling 1-888-SCHWANS and enter or state promotion code "LF" at check out, Schwan’s Home Service will donate 10% of the funds from your order back to the LFA. Schwan’s Home Service brings more than 350 delicious frozen foods right to your door, all with a 100% quality guarantee.

Hurry, offer expires 9/19/2009!

Fill your freezer and fund a cure!

Guest Blogger Amanda Davenport Dishes on "Hell's Kitchen" -- Week 4 - 08/27/2009 08:23 AM

Hello. It is a pleasure to be blogging with you once again. I hope everyone enjoyed Tuesday's episode. I am glad that more of my personality came across in this episode. I am not as quiet as what has been shown to date.

I was shocked that we lost the challenge. I mean, how do you lose to the blue team when their ingredients include figs, apples, angel hair pasta, tomatoes, and haddock? All I can say is that Gordon must have had pity on them or something. This was by far the worst punishment we had to deal with. It was the one time that I flipped out. They woke us up three separate times to receive deliveries. On the third one I had enough. I was just a few days removed from the hospital and starting to get some energy back and my voice had returned and then we need to do this. Not happy!

We got two hours of sleep maybe. I could feel my body starting to regress back to exhaustion and I was starting to really ache. My lungs were paying the price for having to carrying all that stuff into the restaurant. I was carrying as much as I could load up just to get it over with as fast as possible. I paid the price for it both physically and mentally.

I guess losing the challenge helped us out in the long run. The guys were even more run down than we were. Las Vegas can do that to you. I remember thinking that I wish we had won and gone to Vegas. Then I saw the guys walk in and knew that they were worse off than we were. I think we really performed as a cohesive team that night. We looked out for each other and put out a great service. I also have worked as a fish monger, worked on the coast of France at a seafood restaurant and grew up in the Northwest and know how to cook fish. I could totally feel for Van on this night. The prep guys left a very thin piece of plastic that was undetectable unless you were the one that prepped it. It got me once and poor Van twice.

In the end we rocked the service and finally got to see what it was like to sit back and watch the guys put up two of their own. It was a tough night because I like both Robert and Andy. I think Chef Ramsay made the right choice though. It was Robert’s time to go. I hope you all tune in next week. It should be exciting. Keep watching and I will keep fighting.

Amanda

Check Out the Walk for Lupus Now Events Coming Up Thru Mid-September 2009 - 08/26/2009 08:40 AM

The fall Walk for Lupus Now season has begun, with monies raised from these events going to support lupus research, lupus education programs, and patient and family support services.

Here is a listing of Walks through mid-September 2009. They are alphabetical by state.

Have you ever volunteered for a clinical study to obtain health care? - 08/24/2009 03:16 PM

The Lupus Foundation of America is assisting a mid-Atlantic area health reporter who is working on a story about people with lupus who may have volunteered to participate in a clinical study as a means to obtain healthcare that they otherwise may not have been able to secure. If you or someone you know fits this profile, and are interested in participating in a telephone interview for a radio program, please contact Duane Peters via email at peters@lupus.org.

Ideally, the reporter would like to interview someone from the mid-Atlantic region (PA, NJ, DE, MD), however anyone who fits the profile is encouraged to reply, if interested. The reporter wishes to complete the interview by no later than this Friday, August 28.

When responding, please include information about yourself, including your name, age, city and state, email address, daytime telephone number, and information about the clinical study in which you participated. This information will be shared with the reporter who will select one or more individuals to interview.

At the end of summer, Sherri Long will head back to college.

Long, 21, will be entering her senior year at Temple University in Philadelphia. The Colorado native, a human biology major participating in the university's Honors Med Scholar (combined B.A./M.D.) program, will pack her books and her clothes, say goodbye to her family and friends, and return to campus, studies, and activities -- just like millions of students across the country.

But, unlike most of her peers, she faces challenges on campus beyond mastering academics and juggling an active social schedule. Long, who was diagnosed with systemic lupus when she was 12, must also make sure a support system is in place to help her deal with her illness -- no easy feat for an active young person 2,000 miles away from home.

Read more >>

* Taken from the Lupus Now archives

Guest Blogger Amanda Davenport Dishes on "Hell's Kitchen" -- Week 3 - 08/21/2009 07:50 AM

Hello all! I hope you all had a chance to watch this week’s episode of Hell's Kitchen. It was one of my favorites to-date. I think it shows that when the teams are equal that the sides are pretty evenly matched.

The fact that we knocked the low calorie meal out of the park was a highlight of the series for me. Especially being someone who tries to eat healthy and keep the diet balanced to help my battle with lupus.

There was no way I was gonna miss out on a day at the beach, with sun, sand, fun, and drinks with umbrellas! Anyone that knows me is aware that my dream is to have little fish shack on an island.

I will say that I don't think it would be possible to work the hours that are required in the kitchen if I didn't develop a workout routine and stick to it. I make sure that I carve out time in my day to go for a run or head to the gym. I feel that the combination of a balanced healthy diet and exercise is what gives me a fighting chance against this disease.

Back to the show. It is pretty apparent when this episode was taped that I was still battling the lupus flare. I was on a steroid pack and my voice hadn't come back just yet. Add to the fact that Chef Gordon called me back from the lineup and started asking about my health. I am a little hard headed and was not going to leave because of lupus. I wish they would have shown more of that.

Luckily, I was starting to get some energy back which was huge considering we went straight from the beach and into service. I felt this was one of my better services. It is a good thing if Chef Gordon is not yelling your name. I kept my station moving right along with no issues and was able to jump over and help the team when Tennille had her moment with Gordon.

It has been fun blogging with you. I can't wait for the next episode.

Keep watching and I will keep fighting!

Amanda

Lately we’ve been hearing a lot of questions from parents about the safety of vaccinations for their children with lupus. That started us thinking about the safety of vaccinations for adults with the disease, too. So we went where everyone goes for questions like these: to the Centers for Disease Control and Prevention (CDC).

The “why” of getting vaccinated is easy: Immunization reduces the risk of infection and the chance of catching certain diseases -- and that’s of the utmost importance for anyone with lupus, of any age, since many of you take medications that suppress your natural immune system function, and because lupus makes you more susceptible to any bug that’s going around.

The question of which vaccines are safe for people with lupus is a little more complicated. Vaccines are produced using an infectious or viral agent. Usually vaccines use a “killed” form, but some use a “live” or an “attenuated” (weakened) form. So, always talk with your doctors before receiving any vaccine. In January 2009, the CDC put out revised immunization guidelines that include several clarifications and additions (PDF). Although specifics are not given for children or adults with lupus, the guidelines address vaccinations for anyone with a compromised immune system -- people with lupus included.

Another common question is which vaccines are considered safe for family members of people with lupus. Probably the simplest rule is to avoid close contact with anyone who receives a vaccine that uses a live or attenuated agent.

This chart is extremely abbreviated -- please go to the CDC website for complete recommendations, indications, and supplemental notes. And remember: Your rheumatologist or doctor experienced in lupus has the last word!

Fall 2009 Issue of Lupus Now Magazine ... Coming in September to A Mailbox Near You! - 08/18/2009 09:05 AM

Have you been seeing the bus stop posters and TV ads? What about those public service announcements on the radio? It’s all part of the national “Could I Have Lupus?” campaign, and we have the Ad Council and the federal Office on Women’s Health to thank. The cover story of the new Fall issue of Lupus Now magazine gives you an in-depth look at one of the courageous Ad Council campaign participants, Wendy Rodgers. The positive and fulfilling ways she is dealing with lupus may inspire you to get involved in our mission.

We don’t have to tell you about the importance of perseverance -- people with lupus are the most resourceful folks we’ve ever met. That’s because life with lupus is full of challenges. We have some people (and organizations) to tell you about who can really help you on your way.

Are you a person who believes that understanding the parts is key to understanding the whole? Then you will pleased to learn that the holistic approach to health care is moving into medical school curricula. In this issue you can read about that, and about the benefits of integrative medicine to people with lupus.

Next question: How much power over pain do you believe you have? Meditation, guided imagery, and especially exercise -- yes, it’s true -- these are just some of the ways one lady with lupus is managing her chronic pain. Find out more in the Wellness article about drug-free pain relief.

Our second Wellness piece is about ways to improve your doctor’s office visit. Whether you’re seeing a new doctor or a familiar one, these suggestions -- including the perspectives of a teenager and her pediatric rheumatologist -- will help you and your doctor make the most of the time you have together.

As always, you can check out the online version of Lupus Now magazine.

Better yet ... why not get a subscription to this award-winning magazine? To do so, simply follow this link.

LFA Needs Your Help -- Urge Your Senators to Cosponsor S. 1630, the Affordable Access to Prescription Medications Act - 08/12/2009 07:55 AM

On Thursday, August 6, 2009 Sen. John D. Rockefeller IV (D-WV) introduced S.1630, “The Affordable Access to Prescription Medications Act of 2009.” The Lupus Foundation of America applauds and supports Senator Rockefeller for creating this important legislation which will provide Americans with chronic diseases vastly improved access to life-saving medications.

“The Affordable Access to Prescription Medications Act of 2009” will protect people with lupus and other chronic diseases from high out-of-pocket expenses for their prescription drugs.

There are several potential new treatments in the near-term pipeline that may provide a better quality of life for people with lupus. But these anticipated new treatments will mean nothing if people with lupus are not able to access them because they are cost-prohibitive. For example, some people with multiple sclerosis, another autoimmune disorder, may pay out-of-pocket in excess of $800 a month for access to new medications.

For people with serious or life-threatening conditions such as lupus, S.1630 will provide greater access and affordability for necessary prescription treatments. The LFA encourages you to join us in supporting this vital legislation by visiting our legislative action center and urging your Senators to cosponsor S.1630.

Go to http://capwiz.com/lfa/home/, click on the link "Urge Your Senators to Cosponsor S. 1630, the Affordable Access to Prescription Medications Act," enter your zip code in the box called "Call Now" and click on the "go" button. You'll then be presented with the contact information for your senators, as well as get talking points for what to say when you call.

Guest Blogger Amanda Davenport Dishes on "Hell's Kitchen" -- Week 2 - 08/11/2009 08:14 AM

Hello once again. It is awesome to be blogging with you. What can I say about this week's episode? I must admit that I was in the midst of a pretty bad lupus flare during this part of the show and my recollection was not the best. I can say that I had been in the hospital and once I got back later that day, I was determined to fight like hell to stay. Most of that was not aired but you can see I am not feeling well if you look closely at me.

I was really struggling to keep my station on point and don't remember how I was able to do it. I had a great service and you never hear my name called. Not easy when you are in the throws of an episode. We finally eliminated Lovely. She was in over her head. To nobody's surprise ... Suzanne keeps yapping.

I’ve shared another one of my favorite recipes for you below. Thanks for watching, and I will continue to keep fighting.

Amanda

Blend all ingredients in blender, except oil. Slowly drizzle oil in until combined.

Lupus Foundation of America Applauds New Legislation that Caps Out-of-Pocket Drug Costs - 08/10/2009 07:54 AM

Provides Protection for People with Lupus and other Chronic Diseases

The Lupus Foundation of America (LFA) President and Chief Executive Officer, Sandra C. Raymond, issued the following statement regarding S.1630 "The Affordable Access to Prescription Medications Act of 2009" introduced on Thursday, August 6, 2009 by Senator John (Jay) D. Rockefeller IV (D-WV).

"We support and applaud Senator Rockefeller for this important bill which will provide all Americans with vastly improved access to life-saving medications. The proposed legislation imposes a $200 cap on the amount a person could be charged for any one prescription, and a $500 cap on the total amount an individual could be charged for all medications during any given month. This is critical to controlling costs for people with lupus, as a past survey has shown that more than 60 percent of patients take five or more medications.

"It has been 50 years since the U.S. Food and Drug Administration approved a medication for lupus. There are several potential new treatments in the near-term pipeline that may provide a better quality of life for people with lupus. But these anticipated new treatments will mean nothing if people with lupus are not able to access them because they are cost-prohibitive. For example, some people with multiple sclerosis, another autoimmune disorder, may pay out-of-pocket in excess of $800 a month for access to new medications.

"Studies have also shown that patients will avoid filling prescriptions, skip doses, or cut pills in half because of costs. Stopping medication can lead to greater disease severity, and for people with lupus, could result in organ failure. In addition, for people with chronic conditions it can often result in hospitalization leading to greater overall health care costs for both patients and society. For patients with serious or life-threatening conditions or for an individual with multiple co-morbid conditions, this legislation will provide greater access and affordability for prescribed treatments.

"We encourage everyone to join us in supporting this important piece of legislation by contacting their Senators and asking them to sign on as a co-sponsor to the legislation. At the Lupus Foundation of America we will do our part to ensure support for this important legislation and watch with great interest as it moves through the United States Congress."

Read the Official Press Release from the Office of Senator John D. Rockefeller.

This notice will be updated as additional details are received from the Centers for Disease Control and Prevention, and as determined by the Lupus Foundation of America’s Medical-Scientific Advisory Council. Please check this notice periodically until this health issue has passed.

The Lupus Foundation of America (LFA) is aware of the concern that people with lupus may have about the recent outbreak of the H1N1 (Swine) Flu. Please know the LFA is monitoring the situation and consulting with our National Medical-Scientific Advisory Council on the possible impact of this virus on people with lupus.

Currently, clinical trials for a potential H1N1 vaccine are set to start around August 10th. If early evidence suggests the vaccine is safe, similar trials would be started in children. Results are expected in early September. The clinical trials are using an inactive vaccine which should be safe for people with autoimmune diseases. Clinical trials will be done over weeks instead of months or longer, with the goal of assessing the vaccine’s safety in time to approve release of the H1N1 vaccine in the fall, before the virus is likely to spread widely in the general population.

At this time, the precautionary recommendations for people with lupus are no different than for the general public. However, it is important to note that people with lupus are typically at increased risk for infections, particularly if they are taking medicines that suppress the immune system. Therefore, it is important to be vigilant about following the general precautions.

* Please remember that you should never discontinue medications used to treat your lupus without first consulting with your doctor.*

Below are simple steps people with lupus and their family members can take to lessen the likelihood of contracting Swine Flu.

While the symptoms of Swine Flu may vary from person to person, according to the World Health Organization, common symptoms include: high fever, cough, and sore throat, symptoms similar to typical influenza, with some patients experiencing diarrhea and vomiting. The cases can rapidly progress to severe and unusual pneumonia.

People with lupus who have a confirmed diagnosis of the Swine Flu can receive treatment with appropriate anti-virals, such as Tamiflu or Relenza. To date, there have not been any major drug interactions between typical lupus medications and to anti-virals effective in treating the Swine Flu.

To receive the latest information and guidelines on Swine Flu, go to http://www.cdc.gov/swineflu/.

As you know, Walk for Lupus Now season is underway, and monies raised from these events support lupus research, lupus education programs, and patient and family support services.

Here is a listing of upcoming Walks, taking place during the month of August.

If you live in any of these areas, I certainly hope you will join us. Or if you have friends or family in these areas, please share this with them as well.

To see what other Walk for Lupus Now events are taking place near you, please visit http://www.lupus.org/walk.

If there is no Walk near you, you can still help the LFA by setting up your own fundraising page and participating in your own walk. For example, you could walk your local mall, hiking path or community park.

Until next time.

House and Senate Propose Increases for Lupus in FY 2010 - 08/03/2009 10:08 AM

On Wednesday, July 22, 2009, the House of Representatives passed the Departments of Labor, Health and Human Services, and Education Appropriations bill for Fiscal Year 2010. The Lupus Foundation of America thanks House of Representative members for including in the bill:

On Tuesday, July 28, 2009, the Senate Labor HHS Appropriations Subcommittee included $5 million for the NLPR program at the CDC for Fiscal Year 2010 in the Senate’s version of the spending legislation, which funds health-related agencies that are important to lupus research such as the NIH, CDC, and the FDA. The Lupus Foundation of America is hopeful that the full Senate Appropriations Committee will concur with the Labor HHS Subcommittee and also pass the $5 million for the NLPR when it is expected to consider the bill on Thursday, July 30, 2009. The bills will then be voted on by the full Senate and negotiated in conference with the House later this fall. LFA will continue its work to ensure that these provisions are included in the final legislation.

The National Lupus Patient Registry is integral to an epidemiological study to determine the true national incidence and prevalence of lupus among all populations and for determining the burden of the disease on individuals, families and society. To date, the NLPR program has received $12.1 million which has been used to create four study sites in California, Georgia, Michigan, New York, and the Indian Health Service.

Guest Blogger Amanda Davenport Dishes on Hell's Kitchen - 07/30/2009 03:24 PM

As this is my first entry, I guess I should catch you guys up on what has been going on. I hope you all enjoyed the show this week. I watched it in Vancouver, Washington surrounded by my friends and family at Pepper's. Pepper's is where I got my start in the restaurant business. It was great to see all those guys, and yes, tequila was involved.

That was one of my favorite days on the show for obvious reasons. I mean you did see the entire restaurant filled with firemen, right? Man I love a man in uniform. Not to mention the fact that the spa day was awesome. I am not gonna lie; I was exhausted when they got us up at 2:00 a.m. to make the pasta for the firefighters.

Lupus and little sleep is not a good combination as you are all aware. In the end it was well worth it ... being able to give something back to those guys. That was so much fun. Plus we kicked the blue teams’ butt. The helicopter ride and the spa treatment was just what I needed to recharge my battery. Once we got back and service began, it was back to reality. You have Gordon yelling, Lovely in the weeds and Suzanne talking nonstop.

Wow!! I was hoping to stay below the radar and just try to get my stuff out and then help the others as needed. I should have known that Gordon would catch me off guard and ask me to do a little multiplication as he was yelling at me. I am totally blaming my response on lupus fog. At that point I probably would have misspelled my own name if asked. Luckily I was able to stay out of the elimination as Lovely and Tenille were chosen.

I was very surprised when Gordon allowed them both to return and decided not to eliminate anyone. I guess he was feeling generous. All in all it was a good night. I am still in the mix and will keep fighting.

Until next time, I have provided a yummy recipe for salmon for everyone to try out.

Amanda

Amanda's Recipe: Blackened Salmon over Watermelon Radish, Cilantro and Cherry Tomato Salad with Cucumber Vinaigrette

Yield: 2 servings.

2 6-ounce salmon fillets
2 watermelon radishes
1 bunch of cilantro
4-5 cherry tomatoes

Blackening seasoning:
1 tablespoon cayenne pepper
1 tablespoon chili powder
1 tablespoon paprika
1 teaspoon cumin
1 teaspoon salt
1 teaspoon Pepper
* Mix all together

Cucumber
Vinaigrette:
2 cucumbers (peeled, roughly chopped)
1 tablespoon honey
1/4 cup rice wine vinegar
1 1/2 cups of grape seed oil
1 teaspoon salt
pinch of pepper

*Combine all ingredients in blender except grape seed oil. Blend and slowing add oil until combined.

Dust salmon with blackening seasoning, Add oil to pan and heat. Sear salmon seasoned side down first, until brown, then flip and finish in 400 degree oven until cooked to you r liking (about 3 minutes for medium rare, depending on thickness).

Peel and julienne watermelon radishes, rough chop cilantro and cut cherry tomatoes in half. Combine in a bowl and toss with Cucumber Vinaigrette.

Serve salad on a plate with salmon on top.

Lupus is seen two to three times more often in people of African American, Hispanic/Latino, Asian, and Native American heritage than in Caucasians. Information on how medications work in these populations may one day enable physicians and researchers to tailor treatment for each individual.

Read more.

Listen to the Lupus Foundation of America on Blog TalkRadio - 07/24/2009 09:07 AM

Good morning everyone:

Last Wednesday, LFA health educator Dawn Isherwood appeared on the Blog TalkRadio show "Conversations with Linda" to discuss lupus.

Hosted by Linda Lawson, "Conversations With Linda" is a lifestyle show "... representing all aspects of life, featuring experts from every field." Appearing on the show with Dawn was Denise Williams, who initially struggled with depression after her lupus diagnosis.

To listen to an audio recording of show, go to "Conversations with Linda" and scroll to the episode called "What You Need to Know about Lupus."

That's your lupus scoopage for the day. Have a great weekend.

Meet Amanda Davenport, an NYC-based Sous Chef who has lupus, on Fox’s Hell’s Kitchen Tonight - 07/21/2009 08:32 AM

Be sure to watch Amanda Davenport tonight on the premiere of Fox’s Hell’s Kitchen at 8:00 EST/7:00 CST.

Amanda is a 27-year-old Sous Chef based in New York who has lupus. Every week Amanda and 15 other contestants will be put through rigorous culinary challenges ... competing for the grand prize of a Head Chef position at Araxi Restaurant in Whistler, British Columbia, Canada.

Originally from Washington State, Amanda lives in New York City, and received her training from the French Culinary Institute. Amanda is also an active supporter of the Lupus Foundation of America (LFA), and recently participated in the NYC Walk for Lupus Now. We wish her good luck in the competition, and encourage everyone to tune-in and cheer for her.

Read Amanda's Hell's Kitchen bio here.

We’re also thrilled that starting next week, Amanda will be a regular contributor to our blog. She'll provide recaps of previous episodes, and share some of her favorite recipes.

Stay tuned ...

Largest Lupus Drug Trial Ever Completed is Successful! - 07/20/2009 01:49 AM

First Potential Lupus-Specific Treatment in Sight

BENLYSTA™ Successful in First of Two Pivotal Clinical Trials

Today, Human Genome Sciences (HGS) and GlaxoSmithKline (GSK) announced positive results from a year-long clinical trial of BENLYSTA for treating lupus. When the 52-week study concluded, the lupus patients who were treated with BENLYSTA had improvement in overall disease activity without clinically significant flare-ups in one or more isolated organs when compared to patients who received the placebo (inactive agent). The patients receiving BENLYSTA also were able to reduce their intake of steroid medications. The study is the largest ever to be completed for lupus and the first Phase III (late stage) trial of a new biologic immune therapy for lupus to succeed in meeting its primary endpoint and most of its secondary endpoints.

Sandra C. Raymond, President and Chief Executive Officer of the Lupus Foundation of America (LFA) issued the following statement.

"For people with lupus and their loved ones, this is an historic day! With no new drugs for more than 50 years, since the Eisenhower Administration, the news today indicates that it is possible to develop new, safe, and effective therapies for lupus. We are greatly encouraged by the positive top-line data which shows that HGS’ 52-week BENLYSTA study met its primary endpoint. These results provide hope that this complex chronic autoimmune disease can be brought under control and that, eventually, a cure can be found for the estimated 1.5 million Americans and more than 5 million people worldwide living with lupus.

"We look forward to hearing the results, this fall, of a longer-term Phase III clinical study of BENLYSTA. The data from both studies will be evaluated by the U.S. Food and Drug Administration (FDA). Should the FDA ultimately approve BENLYSTA, it would become the first drug successfully developed to specifically treat lupus since the disease was discovered more than a century ago.

"Lupus is a complex disease and not every therapy will be appropriate for all patients. Each person with lupus is unique and it is likely that successful management of lupus will require a number of therapies, perhaps used in combination with each other. The LFA and its Medical-Scientific Advisory Council urge the federal government and industry to greatly step up their research efforts on lupus so that physicians have a complete arsenal of therapies at their disposal to provide the individualized treatment that lupus requires.

"We are grateful to Human Genome Sciences and GlaxoSmithKline for their pioneering efforts to develop a new, safe, effective and tolerable treatment for lupus, to the physicians who have passionately committed to researching this disease, to the companies who continue to invest in finding new treatments, and to the thousands of people with lupus who have volunteered and participated in clinical studies over the years so discoveries such as this one could be possible.

"Meanwhile, the LFA will continue to implement its initiative entitled, A New 21st Century Approach to Lupus Healthcare, to ensure the ongoing advancement of the science and medicine of lupus to meet the multi-dimensional needs of people with lupus."

Watch Sandra C. Raymond’s videotaped comments.

Lupus Foundation of America's Your Skin & Lupus Chat Transcript Posted Online - 07/16/2009 09:22 AM

Thanks to everyone who attended the "Your Skin & Lupus" webchat hosted by Dr. Andrew Franks. It went really well. A copy of that chat transcript has now been posted online.

And, we hope you will join us for the September 9, 2009 webchat. The topic is "Participating in a Clinical Trial," and it's hosted by Mr. Ken Getz.

Mark your calendars for that.

Changing Direction: How Lupus Can Alter Your Life’s Goals For The Better - 07/15/2009 08:19 AM

Shawn Blanton’s grandmother wanted him to be the first in the family to go to college. When he was diagnosed with lupus at 15 and doctors informed the family that he was having mini-strokes, that hope flickered. When they told him he might not live to age 30, it was all but snuffed out.

But Blanton was a self-described “geeky kid who liked school,” especially math and science. He was determined not to let lupus stop him -- even if his diagnosis delayed his dream for a few years. “I have a stubborn streak,” says the now 38-year-old resident of Springfield, IL. “I take after my grandmother that way. I wouldn’t accept what others told me. I was having too much fun living life and trying different things.”

He worked with tutors to graduate from high school with his class, not falling behind despite intense fatigue and lupus-related kidney disease. After high school, Blanton worked for a local video store, advancing in the company until, at 24, he was managing operations for the 100-store chain. But the long hours and travel between stores wore on him. He looked to the things he loved before -- math and science -- and what he’d learned from having lupus, and he settled on a career: physical therapy.

Read the complete article "Changing Direction: How Lupus Can Alter Your Life’s Goals -- For The Better"

Liked what you read? Then subscribe to Lupus Now magazine.

Lupus skin disease, called cutaneous lupus erythematosus, can occur in one of three forms:

Skin disease in lupus can cause rashes or sores (lesions), most of which will appear on sun-exposed areas, such as your face, ears, neck, arms, and legs.

Did you know that approximately two-thirds of people with lupus will develop some type of skin disease?

Read more about how lupus can affect your skin.

New York Times Website's Patient Voices Series Features People Affected by Lupus - 07/10/2009 07:56 AM

As part of its Patient Voices series, The New York Times website is featuring the stories of people from across the country who are affected by lupus. Using audio interviews and photos, Patient Voices seeks to give a glimpse into the life of someone living with lupus.

The individuals featured are as diverse as the disease itself, and include actress/model and Lupus Foundation of America (LFA) national spokesperson Tomiko Fraser Hines, who lost her sister to lupus, and Jeremy Margolis, who recently suffered a heart attack resulting from lupus complications.

The LFA would like to thank the participants for having the courage to share their stories, and believes they will not only help raise awareness of lupus, but will also educate the public about a disease that is often misunderstood and under recognized.

The LFA would also like to extend its gratitude to The New York Times for helping to increase awareness of lupus, an unpredictable and potentially fatal disease that affects an estimated 1.5 million Americans and at least five million people worldwide.

Visit The New York Times website, and listen to the interviews and view the pictures.

LFA's Your Skin & Lupus Webchat to be Held Wednesday, July 15 at 3 p.m. Eastern - 07/08/2009 09:35 AM

Reminder -- the Lupus Foundation of America's Webchat is next Wednesday afternoon, July 15, at 3 p.m. Eastern Time.

The LFA welcomes Dr. Andrew Franks, who will serve as the guest expert for the Your Skin & Lupus webchat.

This is your opportunity to ask questions and learn from a lupus expert. Dr. Franks is Clinical Professor of Dermatology and the Director of the Connective Tissue Disease Section of The Skin & Cancer Unit at New York University Medical Center. He continues to train other dermatologists, rheumatologists, and students in this specialty.

You can submit a question in advance here.

We hope you can join us Wednesday afternoon, July 15. To do so, you can log in to the live chat here.

As always, copies of all chat transcripts are posted online within a day or 2 of the chat. Follow this link to read the LFA's previous chat transcripts.

Good morning everyone. Hope you had a safe 4th of July weekend. Mine was relatively uneventful, which was fine by me.

Let's jump back into things. It's been a while since I did a lupus blog spotlight, so I thought I would this morning.

I would like to share a lupus blog with you. It is called 710.0: A Life With Lupus. As an FYI ... "710.0 " is the ICD-9 (International Classification of Diseases) code for "SLE," aka systemic lupus erythematosus.

Here's a little bit about Beep, a blogger living in California.

"I went from an Ivy League college, to decades of enforced poverty because I've needed to qualify for government health care in the U.S. since being diagnosed with lupus at the age of 23."

If you have some time, swing by 710.0: A Life With Lupus and say hi.

That's the lupus scoop from my end. Happy Monday, and have a great week.

Until next time, Wick

Summer is here, and with summer comes vacations and lots of exposure to the sun. For many people who are living with lupus, this means you have to prepare yourself for the light -- both sun and artificial -- that you’ll face during the day. Every day.

To help make sure you’re as protected as possible when you venture outside … for a game of miniature golf while you’re on vacation, or while you’re working inside beneath fluorescent lights, the LFA has created this special section of content for you.

Positive Long-Term Data for BENLYSTA (formerly LYMPHOSTAT-B®) in Patients with Active Lupus - 06/29/2009 08:19 AM

Human Genome Sciences (HGS) has reported continuation data from a Phase II study of BENLYSTA™ (belimumab, formerly LymphoStat-B®) showing sustained improvement in patients with active systemic lupus after four years of treatment. The data was presented at the EULAR 2009 scientific meeting in Copenhagen, Denmark.

Early results from a 52-week Phase III study of BENLYSTA™ are expected to be announced in July and results from a 76-week study are scheduled to be released in November.

BENLYSTA™ is being co-developed and commercialized by HGS and GlaxoSmithKline (GSK).

The HGS website has the full release about this additional Phase II data.

In the Mix: Designing a Social Life around the Limits of Lupus - 06/26/2009 08:30 AM

It's always a challenge for people with lupus to keep up with more active friends and make concrete social plans. But don’t use it as an excuse for not maintaining old friendships or creating new ones. Instead, focus on helping the people in your life better understand your condition and its restrictions: Once you accept and make peace with your situation, it will be easier for you to explain it to others.

Learn how you can to keep lupus from slowing your social life.

The Summer 2009 Issue of Lupus Now Magazine Has Arrived - 06/24/2009 08:43 AM

We have a lot for you in the new Summer issue of Lupus Now magazine! In particular, the articles cover topics that were requested by our readers in past surveys.

Understanding how lupus runs in families, and why, led to our cover story on the heredity of lupus. It will get you thinking about your own family history, and whether autoimmune diseases have a foothold in your family tree.

And if lupus has caused your path in life to skip outside the lines, or even turn a right angle, you’ll enjoy meeting four people whose lupus changed their lives for the better, in "Changing Direction."

"In the Mix" may help you redesign your social life by hearing from two people whose fatigue and other symptoms have changed the way they keep up with friends.

Ever feel like speaking out on an issue near and dear to your heart? LaShundra Rundles did just that, and gained international recognition for her communication skills -- and as an African American woman. Even more courageous is her ongoing battle with lupus.

The Centers for Disease Control and Prevention recently released new and updated guidelines on vaccinations, and we have summarized the recommendations in a special chart. A report on the exposure you get from artificial indoor UV light will be of great interest to those of you who are photosensitive, even indoors.

Also, starting with this issue, several regular columns have moved online, so look for "Ask the Experts," "Healthful Eating," and "Circle of Hope" at lupusnow.org.

Don't want to miss out on the action? Then subscribe to Lupus Now magazine.

Lupus Foundation of America Urges Department of Defense (DoD) to Expand Medical Research on Lupus - 06/22/2009 08:34 AM

Foundation’s CEO Testifies Before Senate Defense Appropriations Subcommittee

Last Friday, Sandra C. Raymond, President and Chief Executive Officer of the Lupus Foundation of America, appeared before the Senate Defense Appropriations Subcommittee to testify about lupus, the prototypical autoimmune disease that principally affects young women in their child-bearing years. Ms. Raymond also described the impact of the disease on men and young children and the disproportionate impact of the disease on African-Americans, Hispanics, Asian Americans and Pacific Islanders and American Indians. She pointed out that this health disparity remains unexplained. Of the 17 national institutions and organizations that testified at the hearing, the Lupus Foundation of America was one of only five major disease-specific health organizations to present testimony.

In her remarks, Ms. Raymond reported on the genes linked to lupus and how they are triggered by environmental, hormonal and stress factors which, in the American service men and women may be exacerbated by intense training, foreign deployment, exposure to chemical agents, battle and more. Raymond thanked the Committee for including lupus in the Congressionally-directed Peer Reviewed Medical Research Program and asked that the disease remain in the program.

During her appearance, she pointed out that lupus is a significant health issue of concern in the military and in the population at large. She said that the disease is largely undiagnosed and that there was an urgent and unmet need to validate biological markers that can detect lupus in the early stages of the disease. She asked the Committee to consider providing a special focus on research to validate lupus biomarkers which could lead to a screening test for lupus.

Since 2005, the Department of Defense (DoD) has provided more than $7.1 million in new funding to support important studies on lupus and lupus biomarkers through the Congressionally-directed Peer Reviewed Medical Research Program. Four of the six DoD grants awarded to date have specifically focused on lupus biomarkers studies.

Lupus Foundation of America Blog Celebrates Its Second Birthday - 06/18/2009 09:49 AM

With more than 300 posts under its belt, LFA's blog "On the Road to a Cure" turns two this Saturday, June 20.

When we decided to create our blog, we knew that we wanted to create a vehicle that provided a more engaging, conversational take on things happening for the LFA, and in the lupus community at large.

"On the Road to a Cure" has been fortunate to reach out to many of you – here in the states, and around the world – who are living with lupus. It’s been amazing! And as a result of that contact, our blog now boasts links to more than 80 lupus bloggers worldwide.

An unexpected benefit to having this blog is that it has allowed us to actively engage people living with lupus. For example, the blog has been great for recruiting interviewees for articles in upcoming issues of Lupus Now magazine.

Our relationship with other lupus bloggers allowed us to coordinate efforts in regards to LFA's 2009 Advocacy Day on Capitol Hill back in March. As a result of that coordination, and the passion of our bloggers, LFA was able to make the 11th Annual Advocacy Day the largest and most successful in history.

So ... a big thank you to everyone who reads our blog. Together, we share a journey to raise public awareness about lupus, and to one day find a cure for this disease.

Check Out the Walk for Lupus Now Event This Coming Weekend in Minnesota - 06/16/2009 08:52 AM

Watch Dr. Bruce Richardson Discuss His Hypothesis As To Why Men Develop Lupus - 06/15/2009 08:29 AM

Women develop lupus nine times more often than men. Research implicates hormones and having two X chromosomes as risk factors for women. However, little is known about why men develop lupus.

Dr. Bruce Richardson of the University of Michigan has received a Lupus Foundation of America national research grant to study lupus in men. In this video, Dr. Richardson describes his research project and his hypothesis regarding the role epigenetics plays in the development of lupus in males.

Findings of International Survey Highlight the Significant Impact of Lupus on Patients' Lives - 06/12/2009 08:02 AM

Results from an international online survey, carried out by UCB in conjunction with Lupus Europe and the Lupus Foundation of America, the two principal advocacy groups that represent people with lupus, were presented on June 12 during the EULAR (European League Against Rheumatism) congress in Copenhagen, Denmark, at a symposium called "Lupus - Considering the Future."

Professor David Isenberg (Professor of Rheumatology at University College Hospital London), the symposium chairman, commented "Lupus is unpredictable, for some people the effects are more benign but for others, as the survey shows, the disease can have a huge detrimental impact. For all patients, lupus specialists should work via a multi-disciplinary approach tailoring care to the individual needs of the patient." He continued "Because lupus is a complex disease affecting multiple body systems, the development of effective drugs with a favourable risk:benefit profile is a major challenge – the new biological treatments seem to offer hope but we must wait until the results of ongoing trials are known."

About the survey ...

The survey shows that lupus significantly impacts career, physical well-being and everyday living

81% of respondents report a negative impact of lupus on their career, with more than 28% not employed due to the disease

92% of respondents report a negative impact on their physical well being

Fatigue, arthritis and muscle pain reported as most common symptoms

Read the entire press release, and key survey findings, here.

Check Out the Walk for Lupus Now Events This Coming Weekend in Colorado and Wisconsin - 06/10/2009 08:12 AM

The Spring 2009 Walk for Lupus Now season is beginning to wind down. As you know, monies raised from these events support lupus research, lupus education programs, and patient and family support services.

Here is a listing of upcoming Walks, taking place this weekend, June 13-14.

If you live in these areas, I certainly hope you will join us. Or if you have friends or family in these areas, please share this with them as well.

To see what other Walk for Lupus Now events are taking place near you, please visit http://www.lupus.org/walk.

If there is no Walk near you, you can still help the LFA by setting up your own fundraising page and participating in your own walk. For example, you could walk your local mall, hiking path or community park.

We know summer is just around the corner, but we’re already working on the Fall issue of Lupus Now! So, just for a minute, close your eyes and think back -- or ahead -- to Halloween and Thanksgiving, Christmas and Kwanzaa and Hanukkah, winter vacations and New Year’s celebrations, and send us your answer to this "My View" question.

"What are your favorite autumn and winter family traditions?"

Email your response to LupusNow@lupus.org. Make sure your answer is 30 words or less. Please include your first name and last name in the email, and write "Favorite Family Traditions" in the subject line of your email. We'll print as many of the responses as we can.

Global Experts Gather to Tackle the Urgent and Unmet Needs of People with Lupus - 06/05/2009 08:52 AM

This week LFA convened 70 lupus thought leaders from around the world, representing academia, biotechnology and pharmaceutical industries, and government to address the urgent and unmet need for the development and approval of new, safe, effective, and tolerable medications for people with lupus.

Discussions lead to agreement on several key outcomes and next steps including an agreement that LFA lead a collaboration with industry representatives to share and mine data gathered from past studies to determine possible trends in drug development, and to use the collective lessons to better construct future studies of new lupus treatments.

LFA has already begun to work with various stakeholders to implement the recommended strategies outlined during the meeting. The goal is to advance the science and medicine of lupus and bring new hope to people with lupus.

Read the full alert which provides additional information about this important meeting.

LFA's Men & Lupus Webchat to be Held Wednesday, June 10 at 3 p.m. Eastern - 06/04/2009 06:45 AM

Reminder -- the Lupus Foundation of America's Webchat is Wednesday afternoon, June 10, at 3 p.m. Eastern Time.

The LFA welcomes Dr. Mary Anne Dooley, who will serve as the guest expert for the Men & Lupus webchat.

This is your opportunity to ask questions and learn from a lupus expert. Dr. Dooley is currently an Associate Professor Medicine in the Division of Rheumatology and Immunology at the University of North Carolina in Chapel Hill (UNC-CH), and the Director of the UNC Rheumatology Lupus Clinic.

You can submit a question in advance here.

We hope you can join us Wednesday afternoon. To do so, you can log in to the live chat here.

As always, copies of all chat transcripts are posted online within a day or 2 of the chat. Follow this link to read the LFA's previous chat transcripts.

Check Out the Walk for Lupus Now Events This Coming Weekend in California and Florida - 06/03/2009 08:25 AM

If you live in this area, I certainly hope you will join us. Or if you have friends or family in this area, please share this with them as well.

To see what other Walk for Lupus Now events are taking place near you, please visit http://www.lupus.org/walk.

If there is no Walk near you, you can still help the LFA by setting up your own fundraising page and participating in your own walk. For example, you could walk your local mall, hiking path or community park.

Until next time.

Lupus Foundation of America Recognizes Men's Health Month - 06/01/2009 10:03 AM

June is a popular month for men and for fathers. Father's Day is June 21, which also signals the end of Men's Health Week, June 15-21.

So to recognize these and other events this month, the LFA created this special section of content especially for men. Because men develop lupus too.

Learn more at http://www.lupus.org/menshealth.

Check Out the Andrew Sacks Photography Exhibit & Reception This Sunday, May 31 ... to Benefit the LFA, Philadelphia Tri-State Chapter - 05/27/2009 12:43 PM

To our friends in the lupus community who are in the Philadelphia tri-state area, I wanted to share this with you ... there is an upcoming photographer's special reception this Sunday, May 31st from 4 - 6 p.m.

The photographer's name is Andrew Sacks, and his exhibition is to commemorate Lupus Awareness Month in memory of his sister Amy, who passed away from complications of lupus.

The photography exhibition runs from May 8 - June 20, 2009 at the Toro Gallery / Huntingdon Valley Frame Shop, located on 2511 Huntingdon Pike, in Huntingdon Valley, PA.

However, the artist's reception is this Sunday, May 31st from 4 - 6 p.m.

To learn more about this special reception, to get directions, or to make online purchases of Mr. Sacks' photography, please visit the LFA, Philadelphia Tri-State Chapter's website.

We hope you will join us on Sunday!

Check Out the Walk for Lupus Now Event This Coming Weekend in Connecticut - 05/26/2009 08:11 AM

It's now Walk for Lupus Now season at the Lupus Foundation of America. Monies raised from Walk for Lupus Now events support lupus research, lupus education programs, and patient and family support services.

Here is a listing of upcoming Walks, taking place this weekend, May 29-31.

Every 30 minutes ... someone is diagnosed with lupus.

And most of them will have suffered 4 or more years before receiving the diagnosis.

Awareness of lupus and its symptoms can help people seek appropriate medical evaluation, and ask the question Could I Have Lupus?, so they can receive a timely diagnosis.

You can help minimize suffering by joining the effort to raise awareness and understanding of this devastating disease.

Earlier this month, the LFA encouraged everyone to raise awareness of lupus in their own way. Have you done your part?

There is still time to participate -- Lupus Awareness Month is not over!

Today we challenge you to send awareness eCards to those who know little or nothing about lupus. Let’s see how many eCards we can send by midnight this Friday.

Raising Awareness. Your Way.

Tell us how you're helping to raise awareness about lupus. Remember ... May isn't over yet!

Your Input Requested ... Take This Quick 15 Minute Lupus Survey - 05/20/2009 07:37 AM

In June, the European League Against Rheumatism (EULAR) will hold its annual scientific meeting in Copenhagen, Denmark. There will be a program specifically to discuss issues that impact people with lupus around the world. We would like to share what is most important to you with program organizers and presenters!

We invite you to complete the attached survey which has 24 questions and should take 10-15 minutes to complete. All answers are anonymous. A summary of the results may be shared as part of a campaign to raise awareness of lupus. We welcome and appreciate your input.

Take the survey.

And feel free to share this link with others.

Early treatment of lupus helps improve outcomes for patients. Finding better blood tests to predict what is about to happen with lupus disease activity could alert doctors to changes in a patient’s condition that otherwise might not be obvious.

Investigators at UCLA believe they have discovered an antibody in the blood, MAGE-B2, which may be associated with lupus kidney disease in children and could possibly serve as a biomarker. If future studies continue to show an association between the MAGE-B2 antibody and lupus, or even more particularly lupus nephritis, doctors should be able to treat lupus earlier to prevent damage.

Read more about this study.

Mary Wilson Brings the Crowd to Their Feet at the Butterfly Gala -- Sixth Annual Awards Dinner - 05/15/2009 10:33 AM

Mary Wilson, founding member of the world’s most famous female trio, The Supremes, entertained a crowd of nearly 500 at the Lupus Foundation of America’s Butterfly Gala - Sixth Annual Awards Dinner on Tuesday, May 12, 2009 with her signature flair and style. Ms. Wilson is also a best–selling author, motivational speaker, businesswoman, and former U.S. Cultural Ambassador.

CNN Anchor and Special Correspondent, Soledad O’Brien, served as the Master of Ceremonies for the Gala, which honored U.S. Congressman James P. Moran (D-VA, 8th), Sanjay Gupta, M.D., CNN Chief Medical Correspondent, and Roger M. Perlmutter, M.D., Ph.D., Executive Vice President for Research and Development for Amgen, Inc.

The honorees were recognized for their efforts to bring national attention and resources to lupus, a devastating and life-threatening disease that affects an estimated 1.5 million Americans and five million people worldwide.

Read more about the LFA's 2009 Butterfly Gala-Sixth Annual Awards Dinner.

Transcript of Neurology / CNS & Lupus Webchat Now Available - 05/15/2009 08:29 AM

Thanks to everyone who attended the "Neurology / CNS & Lupus" webchat, hosted by Dr. Robin Brey, on Wednesday. It went really well. A copy of that chat transcript has now been posted online.

We hope you will join us for the June 10, 2009 webchat. The topic is "Men & Lupus." Mark your calendars for that.

Check Out the Walk for Lupus Now Events This Coming Weekend in Arkansas, Illinois, New Jersey, Oklahoma, and Vermont - 05/13/2009 09:28 AM

The Lupus Foundation of America (LFA) continues to monitor reports from the Centers for Disease Control and Prevention (CDC) and the World Health Organization (WHO) on the status of the H1NI flu.

At this time, the precautionary recommendations for people with lupus are no different than for the general public. However, it is important to note that people with lupus are typically at increased risk for infections, particularly if they are taking medicines that suppress the immune system. Therefore, it is important to be vigilant about following the general precautions.

Also important: You should never discontinue medications used to treat your lupus without first consulting with your doctor.

We will continue to consult with our national Medical-Scientific Advisory Council, and will provide updates and recommendations as necessary.

Read the LFA's H1N1 (swine) flu advisory.

How Will You Observe Lupus Awareness Month and World Lupus Day? - 05/08/2009 07:57 AM

LFA's Neurology / CNS & Lupus Webchat to be Held Wednesday, May 13 at 3 p.m. Eastern - 05/07/2009 08:11 AM

Reminder -- the Lupus Foundation of America's Webchat is Wednesday afternoon, May 13, at 3 p.m. Eastern Time.

The LFA welcomes Dr. Robin Brey, who will serve as the guest expert for the Neurology / CNS & Lupus webchat.

This is your opportunity to ask questions and learn from a lupus expert. Dr. Brey is a Professor of Medicine in the Division of Neurology at the University of Texas Health Science Center at San Antonio (UTHSCSA). She is the Associate Dean for Research of the UTHSCSA School of Medicine and the Deputy Director of the Institute for Integration of Medicine and Science. Her research interests include the study of the relationship between antiphospholipid antibodies and stroke as well as neuropsychiatric manifestations of Systemic Lupus Erythematosus (NPSLE).

You can submit a question in advance here.

We hope you can join us Wednesday afternoon. To do so, you can log in to the live chat here.

As always, copies of all chat transcripts are posted online within a day or 2 of the chat. Visit here to read the LFA's previous chat transcripts.

Check Out the Walk for Lupus Now Events This Coming Weekend in California, Michigan, and Ohio - 05/06/2009 08:10 AM

It's now Walk for Lupus Now season here at the Lupus Foundation of America. Monies raised from Walk for Lupus Now events support lupus research, lupus education programs, and patient and family support services.

Here is a listing of upcoming Walks, taking place this weekend, May 9-10.

If you live in one of these areas, I certainly hope you will join us. Or if you have friends or family in one of those areas, please share this with them as well.

To see what other Walk for Lupus Now events are taking place near you, please visit http://www.lupus.org/walk.

If there is no Walk near you, you can still help the LFA by setting up your own fundraising page and participating in your own walk. For example, you could walk your local mall, hiking path or community park.

Until next time.

Honor Your Mom This Mother's Day -- And Help Support the LFA - 05/05/2009 08:30 AM

Are you looking for Mother's Day (this Sunday, May 10) gift ideas? Look no further.

SuperJeweler.com has partnered with the Lupus Foundation of America and its Illinois Chapter to help improve the quality of life for thousands of people living with lupus every day. When you purchase a 1/4 ct diamond and amethyst butterfly pendant set in 14k white gold, SuperJeweler.com will donate $60 from each sale to the Lupus Foundation of America.

Honor that special woman in your life ... Mom ... today!

May is Lupus Awareness Month. Spread the Word about Lupus ... Your Way. - 05/04/2009 12:07 PM

May is Lupus Awareness Month, one of several awareness campaigns promoted by the Lupus Foundation of America (LFA) to increase the visibility of lupus. This year, we are asking the lupus community to join us in helping to bring additional attention to this disease ... attention that lupus deserves and requires. Just think of the impact we could make if everyone with a connection to lupus informed 10 people about the disease!

With that in mind, LFA encourages you -- and your family and friends -- to help spread the word about lupus. Your way.

Here are a few suggestions:

Check Out the Walk for Lupus Now Events This Coming Weekend in New York, North Carolina, Texas, and Utah - 04/29/2009 08:41 AM

As you've heard me say before, it's now Walk for Lupus Now season here at the Lupus Foundation of America. Monies raised from Walk for Lupus Now events support lupus research, lupus education programs, and patient and family support services.

Here is a listing of upcoming Walks, taking place this weekend, May 2-3.

I would like to share a lupus blog with you. It is called Looney Lupie Lady.

Here's a little bit about Looney Lupie Lady ... in her own words.

"I am a Christian lady, who has been married to a wonderful man for almost 14 years. We have been blessed with 5 children. The looney part comes in where I homeschool this cat herd! The children have a suspected mitochondrial disorder, so they all have medical and learning issues. I am also working on editing my first book and E-book. I hope to start giving workshops about homeschooling in the near future."

"The lupie part comes in when I began feeling ill. I wrote it off as stress. Soon there was no getting around it; I was sick. I went for answers. It took some time and repeated trips to the doctor, but I was diagnosised with lupus on my 33rd birthday. I also found out that I have celiac disease, Reynaud’s, Sjogrens, and Mixed Connective Tissues Disease."

"So why am I here? There is no reason to reinvent the wheel! I felt the Lord wanted me to reach out to others. Share our successes and failures. I hope to review equipment and items marketed to the disabled. Find ways to save money. After all, diseases like lupus require expensive medication every day of our lives, doctor's visits, and hospitalizations."

"Let us make it each day ... walking by faith, trusting in God to provide."

If you have some time, swing by Looney Lupie Lady and say hi to her.

That's the lupus scoop from my end.

Dear LFA Friend:

I volunteered to serve as a national spokesperson for the Lupus Foundation of America (LFA) soon after my younger sister, Shneequa, was diagnosed with a very serious case of lupus that affected her brain.

My sister was a strong woman who endured much, but somehow always managed to maintain her beautiful smile. Shneequa recently lost her 12-year battle with lupus, passing away quietly on March 18. My memories of Shneequa are very precious to me and to our family. And we will continue to fight for every woman, man and child with lupus until we find a cure.

After Shneequa was diagnosed, I quickly learned how each person’s experience with lupus is unique. I also saw firsthand the side effects from some of the current lupus treatments. These side effects are unacceptable, and some can even be worse than the disease itself. It is hard to understand why it has been 50 years since the Food and Drug Administration (FDA) approved a drug to treat lupus. The lack of new treatments is frustrating to me, and likely to you, as well.

But certainly it is not due to lack of trying by many researchers around the world. Rather, it is due to the complicated nature of the disease.

I want you to know that the LFA is asking the tough questions and working to bring down the barriers that have obstructed lupus research in the past. The LFA research program awards grants to fund studies in important research areas that previously were neglected or underfunded. But last year we were able to fund only one in four worthy proposals submitted by lupus investigators.

It is only with your support that we can unlock the answers to this disease and change the future for those living with lupus. Your special tax-deductible gift to the Lupus Foundation of America will enable the LFA to support critically needed studies to understand the causes of lupus, develop new, more tolerable and effective treatments, and ultimately, find a cure for lupus.

Shneequa has been, and will always be, my inspiration. She is the reason that I continue to advocate at the state and federal level to increase government funding for lupus research. Through research, there is hope. Please make a special tax-deductible gift today so the LFA can provide hope to all people with lupus, and to the families and caregivers of those who are fighting this challenging disease.

Thank you for taking time to read my message, and thank you for your continued support of the Lupus Foundation of America.

Sincerely,

Tomiko Fraser Hines
LFA National Spokesperson and Shneequa Fraser’s big sister

Check Out the Walk for Lupus Now Events This Coming Weekend - 04/22/2009 08:43 AM

Check out the LFA's Updated "Learn About Lupus" Section on Lupus.Org - 04/20/2009 09:18 AM

In preparation for the launch of the Ad Council campaign on lupus, the Lupus Foundation of America (LFA) updated the homepage of the lupus.org website. Part of that update included the renaming / reordering of the website's navigation.

Let me highlight one of the bigger changes we made.

"About Lupus" was renamed "Learn About Lupus." This section features updated content which more closely matches the LFA’s new printed materials. In "Learn about Lupus," you fill find the following content topics.

As you might imagine, we’re very excited about the coming changes to lupus.org, and we think you will be too. So whether you’re new to our site, or you’re a returning visitor, we look forward to providing you with a positive online experience.

Have a great Monday.

Lupus Now Magazine Seeks Interviewees for Upcoming Issue - 04/15/2009 09:13 AM

The Editor of Lupus Now is seeking people to help with an upcoming issue of the magazine. We would love to interview people for the following articles.

If one of these topics resonates with you, and if you think sharing your story might help others, please send your name and contact information, and a little bit about yourself, to lupusnow@lupus.org. Also, please write "Lupus Now Interview" in the subject line of your email.

Interviews are done by phone and will take place at your convenience over the next several weeks.

Thanks for your help!

Lupus Now Magazine Wants to Know Your Answer to the Following Question - 04/08/2009 06:24 AM

We know summer is just around the corner, but we’re already working on the Fall issue of Lupus Now! So, just for a minute, close your eyes and think back -- or ahead -- to Halloween and Thanksgiving, Christmas and Kwanzaa and Hanukkah, winter vacations and New Year’s celebrations, and send us your answer to this "My View" question.

"What are your favorite autumn and winter family traditions?"

Email your response to LupusNow@lupus.org. Make sure your answer is 30 words or less. Please include your first name and last name in the email, and write "Favorite Family Traditions" in the subject line of your email. We'll print as many of the responses as we can.

Your deadline is June 1!

Find a Walk for Lupus Now Event Near You ... Here's What's Coming in April / May 2009 - 04/06/2009 08:06 AM

Spring has sprung (as they say), and you know what that means ... it's now Walk for Lupus Now season here at the Lupus Foundation of America. Monies raised from Walk for Lupus Now Walks will support lupus research, lupus education programs, and patient and family support services.

Here is a listing of upcoming Walks, taking place in April 2009.

Washington, DC -- April 18, 2009
Atlanta, Georgia -- April 25, 2009
Raleigh, North Carolina -- April 19, 2009
Charleston, South Carolina -- April 26, 2009
Dallas, Texas -- April 25, 2009

Here are our Walk for Lupus Now Walks in May 2009.

Hot Springs, Arkansas -- May 16, 2009
San Diego, California -- May 9, 2009
West Hartford, Connecticut -- May 31, 2009
Vernon Hills, Illinois -- May 16, 2009
Battle Creek, Michigan -- May 9, 2009
Piscataway, New Jersey -- May 17, 2009
New York City, New York -- May 2, 2009
Charlotte, North Carolina -- May 2, 2009
Columbus, Ohio -- May 9, 2009
Oklahoma City, Oklahoma -- May 16, 2009
Houston, Texas -- May 2, 2009
Salt Lake City, Utah -- May 2, 2009
Montpelier, Vermont -- May 17, 2009

To see what other Walk for Lupus Now Walks are taking place near you, please visit http://www.lupus.org/walk.

If there is no Walk near you, you can still help the LFA by setting up your own fundraising page and participating in your own walk. For example, you could walk your local mall, hiking path or community park.

Do You Want to See How / Where Lupus Affects the Body? Then Try the LFA's New Interactive Tool. - 04/03/2009 08:49 AM

The Lupus Foundation of America has created an interactive tool -- The Impact of Lupus on the Body -- that allows users to better understand the many ways lupus can affect the body.

The interactive tool depicts a human body, and as users scroll over each organ system, it becomes highlighted and features a text box with a brief description of how lupus can damage that particular organ or system.

Individuals will also be directed to complete the "Could You Have Lupus?" symptom checklist and answer a series of health questions based on current and past medical history. After completing the symptom checklist individuals have the option to print out a report with their answers to share with their doctor.

Try our new tool today, and learn "the impact of lupus on the body."

Dear Friends of the LFA:

It is an exciting day! Today I represented the Lupus Foundation of America (LFA) in Washington, DC to help the Advertising Council and the U.S. Department of Health and Human Services’ (HHS) Office on Women’s Health launch a new national lupus public awareness campaign.

The LFA is Founding Partner on this campaign, which is directed toward individuals most at risk for developing the disease: young minority women of childbearing age. I hope you will take a few minutes to check it out.

I am honored to be a part of this effort to help raise awareness of a disease that has long been overshadowed and overlooked. This morning, I participated in media interviews through a satellite hookup with radio and television stations throughout the United States. LFA President and CEO Sandra Raymond and I then spoke at HHS headquarters about the urgent need to increase public awareness of lupus symptoms to improve early diagnosis and treatment of lupus.

The objectives of this new campaign are to help the public understand lupus and its health effects, and to help people at risk for lupus identify early warning signs of the disease so they can ask their doctor for a medical evaluation. The campaign includes radio and television public service announcements in both English and Spanish. Multi-language print, outdoor, transit and Internet advertisements are also included. The campaign’s website, http://couldihavelupus.gov/, features information about lupus symptoms, diagnosis and treatment, links to resources, and stories from women who are living with lupus.

The LFA and its nationwide network of nearly 300 chapters, affiliates and support groups will promote the campaign through outreach efforts to local media outlets. The LFA has expanded its online resources to include an interactive tool and symptom checklist, launched a new education series of booklets and fact sheets, and enhanced its network of health educators to meet an expected increase in the number of people seeking information and services in response to the campaign.

Through this campaign, we hope lupus will get the attention that you and I both know it needs and deserves.

xoxo,
Mercedes Yvette

National Lupus Awareness Campaign Material

Campaign Materials:
http://couldihavelupus.gov/

LFA Campaign Resources:
http://www.lupus.org/AdCouncil

About Mercedes Yvette
In 2004, as a contestant and runner-up on America’s Next Top Model, Mercedes revealed to a nationwide television audience that she has lupus. Since assuming her spokesperson role with the LFA, Mercedes has participated in national television appearances to promote awareness of lupus, and joined other lupus advocates on Capitol Hill to seek increased federal funding for research on lupus.

Watch the Latest Lupus-Related Videos on LFA's YouTube Channel - 03/25/2009 08:47 AM

Morning everyone.

Wanted to remind you that the Lupus Foundation of America (LFA) has its own lupus channel over on YouTube.com.

I encourage everyone to head over there and check out some of the LFA's public service announcements (PSAs), as well as our videos of lupus experts talking about the latest in science and research.

Let me share one with you.

Below is a recently made video called "Target Awareness." This video provides a brief overview of lupus and its symptoms and health effects, and an overview of some of the support services available from the Lupus Foundation of America.

And one of the great things about YouTube is ... if you are moved or inspired by a particular video, you can embed the HTML code on your own blog, or website. The more people who see these videos and understand the seriousness of lupus, the more the public's level of awareness is raised, which will translate into more funding for lupus-related research.

So feel free to bookmark the LFA's channel in YouTube, or better yet, subscribe to that page. I'll be featuring other videos in the coming weeks.

Lupus Foundation of America is "Walking" into the Twin Cities - 03/23/2009 10:30 AM

Join the Lupus Foundation of American as it launches its inaugural Walk for Lupus Now event in Minneapolis, Minnesota on Sunday, June 21, 2009. As you know, it is estimated that 1.5 million Americans have a form of lupus, and 14,250 of them live in the Twin Cities metropolitan area.

Come together with other families touched by lupus for a fun, inspiring and hope-filled morning at Lake Calhoun.

To register as an individual, or as part of a team, go to Twin Cities Walk For Lupus Now.

Here are some of the details for the Twin Cities Walk.

Sunday, June 21, 2009
Lake Calhoun
3000 Calhoun Pkwy
Minneapolis, MN
Check in 9 a.m.; Walk begins 10 a.m.

Walk for Lupus Now is the national signature event of the Lupus Foundation of America. In 2009, volunteers will be walking in 50 cities across America in order to raise awareness about lupus, and raise much needed funds to support LFA programs in advocacy, research, and education.

To find an LFA Walk for Lupus Now event near you, visit www.lupus.org/walk or call 202-689-5516.

Spring 2009 Issue of Lupus Now Magazine ... Coming to A Mailbox Near You! - 03/20/2009 08:13 AM

The first issue of Lupus Now 2009 has information in store on many important topics for people with lupus, including Vitamin D -- why you need it and how to get it; heart-healthy guidelines; and five new books recommended by the LFA education Committee that you’ll want to check out.

You’ve heard us talk a lot lately about the first-ever national Ad Council campaign designed to raise public awareness about lupus. In conjunction with the awareness campaign’s launch this spring, the first feature, “The Butterfly Effect,” examines the importance of early diagnosis and treatment, and follows three young women as their lives change forever.

We all know how difficult it can be to explain lupus to friends and family. So, the second feature, “But You Don’t Look Sick!” -- and who hasn’t heard those words one too many times? -- is about helping others understand the effects of medications, the inevitable mood swings, and the feeling of missing your former “self.” Lupus is so much more than a list of symptoms, isn’t it?

And those pretty ladies on the cover? They are muralist and children’s book writer/illustrator Adjoa Burrowes and her teenage daughter, Hyacinth and another teen, Chelsea. In the Teen Talk column they talk about growing up with a mom who has lupus. Are they worried about having lupus themselves? What about going away to college? And how did their moms ever find the words to explain lupus?

The Wellness section reveals conversations we have had with people about how they cope with anxiety, which is very bad for lupus! We also hear from women and men about how they show appreciation for that special person who is there for them every day, no matter what. And nothing is more important than that.

As always, you can check out the online version of Lupus Now magazine.

Better yet ... why not get a subscription to this award-winning magazine? To do so, simply follow this link.

Guest Bloggers Share Their 2009 Lupus Foundation of America Advocacy Day Experiences - 03/18/2009 12:26 PM

Facebook, Twitter, Bloggers, and Advocates on Capitol Hill Create the Largest Lupus Advocacy Day in History - 03/12/2009 11:29 AM

1300 Advocates Make Their Voices Heard

The real and virtual worlds came together on March 3, making the Eleventh Annual Advocacy Day the largest and most successful in history. We used social media and the Internet to spread the word and encourage people to get involved. E-cards were sent to our constituents with suggestions on how they could help, and we asked them to send their own e-cards to friends and family. We asked people to change their Facebook status, post information on their blogs, and use Twitter to keep everyone updated on Advocacy Day activities. A sea of advocates covered in purple also descended on Capitol Hill delivering the same message to Members of Congress -- federal funding for lupus research must be increased.

Lupus advocates drove long hours, endured bad weather, and overcame personal challenges to join us on Capitol Hill. Advocates prepared for their visits by participating in a day-long training that was kicked-off with the theme music from the movie Rocky, and the distribution of purple (the signature color for lupus) scarves. The Rocky theme music was used to inspire and motivate the advocates, while demonstrating the tenacity and fighting spirit of people with lupus. During the training advocates celebrated past successes, learned how federal funding is being used to advance lupus research, and discussed how to talk to Congressional Members and staff about our legislative agenda.

On Advocacy Day advocates wore their purple scarves. To reinforce the message of the day, they also wore stickers with the message "Eisenhower was president the last time the FDA approved a drug for lupus." Most people were surprised to learn that it has been 50 years without a new, FDA-approved lupus drug.

Senator Barbara Mikulski (D-MD) delivered a speech during the Advocacy Day luncheon that energized the advocates and brought the crowd to their feet. She reminded everyone how important advocacy is, and that we have great hope and potential for change. Senator Mikulski has always been a health care champion and patient advocate, and the LFA was pleased to present her with the Distinguished Leadership Award for her work on the Lifespan Respite Care Act, and past support of the Lupus REACH Amendments.

Advocates were successful in forming new relationships with Members of Congress and staff, and more importantly creating new champions for people with lupus on Capitol Hill. During many of the visits Members of Congress or their staff also found new connections to lupus. One advocate learned that a staff member attended high school with her daughter who has lupus. This is just one of many stories, and is a powerful reminder of how lupus touches everyone, and that it reaches beyond just the person living with the disease. We are thrilled with the results the lupus advocates achieved and thank everyone for their participation in Advocacy Day activities.

In the coming days and weeks we will be posting photos from our advocates on Flickr, and a video documenting their experience on Capitol Hill will be posted on our website and YouTube.

We have made our voices heard loud and clear on Capitol Hill -- and will continue to do so. With your ongoing support we believe we can achieve our goals and get the funding for lupus research we need that will lead to new treatments, and ultimately a cure.

Find a Walk for Lupus Now Event Near You ... Here's What's Coming in April / May 2009 - 03/11/2009 08:36 AM

A small-scale study of lupus patients with severe lupus nephritis (lupus kidney disease) indicates that the immunosuppressive drug rituximab could improve the health of patients who have few other treatment options and who might otherwise develop end-stage renal disease (ESRD). The findings of this long-term study conducted in the United Kingdom will appear in the upcoming issue of the Clinical Journal of the American Society Nephrology (CJASN).

Genentech developed rituximab for the treatment of non-Hodgkin's lymphoma. In this study, researchers retrospectively assessed the long-term (≥12 months) efficacy and safety of rituximab in 20 SLE patients with severe lupus nephritis. After an average follow-up of 22 months, kidney improvements were seen in 12 patients (60%).

Fadi Fakhouri, M.D. of Imperial College in London, UK, is the study's principal investigator. The study's findings are encouraging and provide further data to suggest that rituximab, which has low toxicity, could be an effective option for patients with lupus nephritis that is resistant to conventional therapy. The LFA awaits the results of a much larger study currently underway.

Read a news report about the study, which contains additional information.

The LFA is encouraged by these results as they provide additional evidence that potential safe, more tolerable and effective treatments for lupus will soon be available. It has been more than 50 years since the U.S. Food and Drug Administration (FDA) last approved a drug for lupus. Currently, more than 20 different studies are underway of potential new therapies for lupus.

The LFA recently launched the Center for Clinical Trials Education (CCTE) for individuals who are interested in learning more about participating in a lupus clinical trial. Visit the CCTE on the LFA website at www.lupus.org/clinicaltrials.

LFA's Kidney Involvement & Lupus Webchat to be Held Wednesday, March 11 at 3 p.m. Eastern - 03/05/2009 09:31 AM

Reminder -- the Lupus Foundation of America's Webchat is Wednesday afternoon, March 11, at 3 p.m. Eastern Time.

The LFA welcomes Dr. Brad Rovin, FACP, FASN, who will serve as the guest expert for the Kidney Involvement & Lupus webchat.

This is your opportunity to ask questions and learn from a lupus expert. Dr. Rovin is the Director of the Division of Nephrology, and is also the Director of the Fellowship Program in Nephrology at Ohio State. Dr. Rovin has been at Ohio State University for 19 years, and has been recognized by Best Doctors® for his work in the area of glomerular diseases.

You can submit a question in advance here.

We hope you can join us Wednesday afternoon. To do so, you can log in to the live chat here.

As always, copies of all chat transcripts are posted online within a day or 2 of the chat. Visit here to read the LFA's previous chat transcripts.

Call-In to Congress on Tuesday, March 3, and Make Your Voice Heard – More Money is Needed for Lupus Research. - 03/02/2009 10:47 PM

Fifty years is too long to wait for safer, more tolerable and effective FDA-approved lupus treatments. Help the estimated 1.5 million Americans living with lupus by being a part of the "Call-In to Congress" component of the Lupus Foundation of America’s 11th Annual Advocacy Day on March 3, 2009.

Simply go online to the LFA's advocacy action center located at http://www.capwiz.com/lfa, and click on the link called "Call your Members of Congress Tuesday, March 3rd!" Then, you’ll enter your zip code and get the phone numbers for your elected officials.

The other thing you will notice after you’ve entered your zip code, is that you will also see a guide of Talking Points for when you speak with Congressional Staff. Use these talking points to tell them how having lupus or knowing someone with lupus has affected your life.

The link to the LFA’s advocacy action center again is http://www.capwiz.com/lfa.

Together, we can change the future of those affected by lupus.

Here's One Way You Can Raise Awareness about Lupus; Send an eCard - 03/01/2009 07:02 PM

Hi everyone:

And welcome to the special Sunday night, pre-Advocacy Day on Capitol Hill edition of an update to the Message Boards news section.

As you no doubt have heard, this coming Tuesday, March 3, 2009, is the Lupus Foundation of America's 11th Annual Advocacy Day on Capitol Hill. Even if you cannot physically join us on Tuesday, there are still several things you – and your family and friends – can do to help raise awareness about the seriousness of lupus. I'd like to highlight one way.

Send an eCard

Raise awareness about lupus and the need for new treatments by sending your friends and family an eCard. There are 3 cards to choose from: Eisenhower, nostalgic cars, and traffic jam.

Fifty years is entirely too long to wait for better, safer, and more tolerable treatments.

Help the Lupus Foundation of America raise awareness about the seriousness of lupus. Send an eCard to your family, friends, and coworkers today.

I'll be back again tomorrow night, to share with you how to contact your senators and representative on Tuesday, March 3. It's simple to do, and you can do it from the comfort of your home.

Even If You Cannot be in DC for LFA’s Advocacy Day, Here’s What You Can Do from the Comfort of Your Home - 02/26/2009 03:51 PM

March 3, 2009 is the Lupus Foundation of America’s 11th Annual Advocacy Day on Capitol Hill. Even if you cannot physically join us on Tuesday, there are still several things you – and your family and friends – can do to help raise awareness about the seriousness of lupus.

Call your Representative and Senators and tell them to provide more funding for lupus research. To find your Senators and Representative, go to http://www.capwiz.com/lfa and click on the link "Call your Members of Congress Tuesday, March 3rd!" Then you will enter your zip code, and get the contact info for your senators and representative.

Send an e-card. Raise awareness about lupus and the need for new treatments by sending your friends and family an e-card. Go here to send an e-card.

Donate. With your donation we can continue to fund cutting-edge lupus research. Go here to make a donation.

Facebook
There is one very simple thing you can do in Facebook. Below is suggested text that you can use for your status on your Facebook account for Tuesday, March 3, 2009. Encourage your family and friends to change their statuses as well.

"YOUR NAME is encouraging friends and family to support the LFA’s Advocacy Day. Tell Congress 50 years without a new FDA-approved lupus drug is too long http://www.capwiz.com/lfa"

Twitter
If you have a Twitter account and are joining us for Advocacy Day, you can "tweet" your Advocacy Day experience. You might want to post updates such as "Heading to Capitol Hill now" or "Meeting with Senator Young."

If you’re not able to be on Capitol Hill, you can still use your Twitter account to encourage people to call their Senators and Representatives, and raise awareness about the need for new, safe, tolerable, and effective treatments. Below are some suggested "tweets."

"Support LFA’s Advocacy Day tomorrow. Tell Congress 50 years without a new FDA-approved lupus drug is too long. http://www.capwiz.com/lfa"

"Join me and call Congress and tell them 50 years without a new FDA-approved lupus drug is too long. http://www.capwiz.com/lfa"

Visit the Lupus Foundation of America's Lupus Channel on YouTube, and Watch the Latest PSAs and Research Videos - 02/20/2009 09:18 AM

I encourage everyone to head over there and check out some of the LFA's public service announcements (PSAs), as well as our videos of lupus experts talking about the latest in science and research.

Below is a recently made video called "Biomarkers for Heart Disease in African American Women with Lupus." In it, Dr. James C. Oates, Associate Professor of Medicine at the Medical University of South Carolina, discusses his LFA-supported research study on Biomarkers of Reactive Nitrogen and Oxygen Stress as Risk Factors for Cardiovascular Disease in African Americans with Lupus.

Cardiovascular disease has become one of the leading causes of disability and mortality among people with lupus. The LFA is leading efforts to address study this serious complication of lupus and find ways to treat or prevent CVD in people with lupus.

So feel free to bookmark the LFA's channel in YouTube, or better yet, subscribe to that page. I'll be featuring other videos in the coming weeks.

Stimulus Bill Includes NIH Funding for Research; LFA Advocates to Bring Focus on Lupus - 02/18/2009 08:40 AM

Yesterday, President Obama signed into law the American Recovery and Reinvestment Act of 2009. With the leadership of Senator Arlen Specter and Senator Tom Harkin, Congress secured a significant funding increase of $10.4 billion for the National Institutes of Health (NIH). Among other provisions this bill will provide much-needed funding to support research leading to scientific and medical breakthroughs, and ultimately new treatments. This is a victory for the medical and scientific community who are working tirelessly to develop new treatments for people with lupus and other diseases.

Government funding for lupus research is more important than ever before. November 20, 2008, marked 50 years since the Food and Drug Administration (FDA) last approved a new drug specifically to treat lupus. Compared to other diseases, lupus is unique, both in its lack of FDA-approved treatments, and in the dearth of research endeavors to identify better treatments, and, ultimately, a cure.

On March 2-3 an estimated 300 individuals with lupus, their families, and health professionals will deliver this message to Members of the United States Congress, and serve as the voices of the estimated 1.5 million people who have lupus, when the Lupus Foundation of America (LFA) conducts its Eleventh Annual Advocacy Day in Washington, D.C. LFA advocates have achieved numerous successes in recent years, including a call for a national public awareness campaign, funding for studies that determine the true prevalence of lupus in the U.S. and opening new sources of federal agency funding for biomedical research.

The past success of our advocates and the new legislation demonstrate the critical importance of advocacy efforts and why people with lupus must be heard by their elected officials and encouraged to support policy that expands research funding, increases access, and improves the quality of care. We hope that you will join us and that we can continue to count on your support in the fight against lupus.

On behalf of all people affected by lupus, the Lupus Foundation of America thanks President Obama and Congress for supporting NIH research and helping us move closer to finding better treatments and a cure for this disabling and life-threatening disease.

Sincerely,
Sandra C. Raymond
President and CEO

Join us in the fight against lupus -- sign up to become an e-advocate today!

Women’s College Basketball Teams Show They’re Passionate about Helping Those With Lupus - 02/17/2009 09:25 AM

In October 2008, the Lupus Foundation of America (LFA) was contacted by Simmons College Head Women's Basketball Coach Tony Price who wanted to do something to support those affected by lupus. He has a personal connection to lupus, and as a coach at an all women’s college, he feels the need to help support and raise awareness of a disease that is often overshadowed.

Through Coach Price’s leadership and vision, the first-ever "Passionate Purple" week was created -- a week in January where women's basketball teams and game programs were dedicated to raising awareness about lupus and collecting funds to be donated to the LFA. During the week, the players, coaches, and fans were encouraged to wear purple -- the signature color of lupus.

Another member of the Great Northeast Athletic Conference (GNAC) family, Mount Ida Head Women's Basketball Coach Jack Casey has also felt the effects of lupus. Coach Casey's wife Annemarie has lived with lupus for 28 years. As an active member of the lupus community, she used the Mt. Ida game as another opportunity to share her story about what it’s like to live with lupus, and why every dollar and every person reached matters.

We are thankful for the leadership of Coach Price and the support of the GNAC schools, and its players, coaches, students, faculty, and fans who helped raise money that will support LFA’s programs. We think it’s great that we get contacted by organizations and individuals like the GNAC and Coach Price who want to partner or do an awareness event, whether it’s on a small or large scale, and hope people continue to follow their lead.

Thanks Coach Price and GNAC!!!

Lots of Ways to Stay Informed with the Lupus Foundation of America - 02/13/2009 09:08 AM

Good morning everyone:

Wanted to share a few things with you.

First, thanks to everyone who attended the "Cardiovascular Health & Lupus" webchat hosted by Dr. Amy H. Kao on Wednesday. It went really well. A copy of that chat transcript has now been posted online.

We hope you will join us for the March 11, 2009 webchat. The topic is "Kidney Involvement & Lupus," and it's hosted by Dr. Brad Rovin. Mark your calendars for that.

Also wanted to let you know you can now follow the Lupus Foundation of America in 2 new ways.

LFA on delicious
Join the LFA on delicious, one of the web's largest social bookmarking websites.
http://delicious.com/LupusFoundation

Twitter.com
You can now follow the Lupus Foundation of America on Twitter.com/LupusOrg.

That's your lupus scoop for the day. Have a great Presidents' Day weekend.

In the January 2009 Lupus Living enewsletter, we challenged you to share with us your ideas for trying to raise awareness about lupus, as part of the "Zero in 50" campaign.

The LFA received an impassioned video from "the LEEP Chat Channel," a young woman who is living with lupus. After reading that there had been no new drugs in 50 years, she was compelled to respond, and take action. Watch her video.

Seeking Men with Lupus to be Interviewed for a Lupus Now Magazine Article - 02/10/2009 08:09 AM

Good morning everyone:

Wanted to pass along a request from my coworker Jenny Allan, the editor of Lupus Now magazine.

Seeking Men with Lupus for Lupus Now article

The editor of Lupus Now, the LFA’s national magazine, is working on a story on Inspirational Role Models -- interviews with people who began a new business or career direction due to lupus.

If you are a man with lupus who can speak on this topic, or if you know a man with lupus who fits this profile, we would like to hear from you. Send an email to lupusnow@lupus.org. Please put “New Career” in the subject line.

On behalf of Jenny, I wanted to say thanks in advance to everyone for helping us out. Have a great Tuesday.

Until next time, Wick

Save a Heart with Lupus. Send an eCard this Valentine's Day. - 02/09/2009 09:16 AM

It's Heart Health Month, so warm a heart this Valentine's Day and make a donation to support the Lupus Foundation of America by sending an eCard to someone you care about.

With your donation we can continue fund critical cardiovascular research and education programs that will help protect the hearts of those with lupus.

Give hope to the hearts of those with lupus by sending your donation eCard today.

LFA's "Cardiovascular Health and Lupus" Webchat to be Held Wednesday, February 11 at 3 p.m. Eastern - 02/06/2009 08:17 AM

Reminder -- the Lupus Foundation of America's Webchat is Wednesday afternoon, February 11, at 3 p.m. Eastern Time.

The LFA welcomes Dr. Amy H. Kao, who will serve as the guest expert for the Cardiovascular Health and Lupus webchat.

This is your opportunity to ask questions and learn from a lupus expert. Dr. Kao is currently assistant professor of medicine at the University of Pittsburgh and rheumatologist with the Lupus Center of Excellence at the University of Pittsburgh Schools of the Health Sciences and University of Pittsburgh Medical Center (UPMC).

You can submit a question in advance here.

We hope you can join us Wednesday afternoon. To do so, you can log in to the live chat here.

As always, copies of all chat transcripts are posted online within a day or 2 of the chat. Visit here to read the LFA's previous chat transcripts.

Hotel Registration Deadline for Advocacy Day 2009 Extended To Friday, February 13 - 02/04/2009 06:56 AM

LFA Congratulates Dr. Joseph Ahearn for Receiving DoD Grant for Research on Lupus Biomarkers - 01/30/2009 08:00 AM

The Lupus Foundation of America, Inc. (LFA) congratulates Joseph M. Ahearn, M.D., Associate Professor of Medicine and Co-Director of the Lupus Center of Excellence at the University of Pittsburgh, for being selected to receive a research grant from the U.S. Department of Defense’s (DoD) Congressionally Directed Peer Reviewed Medical Research Program (PRMRP). The DoD award will fund the Lupus Center of Excellence’s ongoing studies on lupus biomarkers.

Biomarkers are specific biochemicals found in the body which are structured in a way that make them useful for diagnosing a disease, measuring its progress or measuring the effects of treatment. Research on lupus biomarkers is a key area of scientific interest for the LFA.

Dr. Ahearn also is the recipient of a research grant from the LFA for a study on lupus biomarkers, "Biomarkers for Diagnosis, Monitoring and Prognosis in Pediatric Lupus." This is the first study in which biomarkers for lupus are being investigated in both adults and children. Dr. Ahearn is one of two lupus investigators to receive grants through the LFA’s newly established Michael Jon Barlin Pediatric Lupus Research Program. The LFA is the only national voluntary health organization with a research program specifically dedicated to studies on lupus in children. Read more about this research initiative and Dr. Ahearn’s research study.

Through its advocacy initiatives that began in 2003, the LFA pioneered efforts to have lupus and lupus biomarkers included as disease areas eligible for research funding through the PRMRP. The LFA made a persuasive case to DoD officials that described the relevance of lupus research to military personnel and their dependents. These efforts have opened a new source of much needed funds to support research on lupus.

Since including lupus and lupus biomarkers among the areas approved for funding, the PRMRP has awarded six grants totaling more than $6 million in new funding to support important studies. Four of the six DoD grants have specifically been awarded for studies on lupus biomarkers.

The development of new biomarkers for lupus could have profound benefits in obtaining U.S Food and Drug Administration (FDA) approval for new, safe and more tolerable therapies for lupus, not only by providing the sophisticated level of guidance needed so that these agents will work optimally, but also by simultaneously providing objective measurements to demonstrate if the new treatment is working. More targeted therapies, or even better biomarkers to guide existing treatments, will allow physicians to treat lupus while avoiding the sometimes devastating side effects caused by current methods used to control the disease.

Funding for lupus research through the DoD and all other relevant federal agencies has been a long-recognized priority for LFA advocacy efforts. Due to the changing demographics of the military population, there is an ever-increasing prevalence of lupus in military and Veterans Hospital Clinics. The LFA recognized this emerging health issue and worked to have lupus included in the PRMRP to advance research on lupus, which ultimately will help military personnel and their families affected by lupus.

To learn more, visit the DoD’s Congressionally Directed Peer Reviewed Medical Research Program’s Web site at http://cdmrp.army.mil/prmrp/

Learn more about LFA advocacy initiatives or LFA-funded research.

Watch a video interview with Dr. Joseph Ahearn, Director of the Lupus Center of Excellence at the University of Pittsburgh. Below, he discusses his LFA-supported research study, "Biomarkers for Diagnosis, Monitoring and Prognosis in Pediatric SLE."

2008 Was a Year of Progress and Hope for a Better Quality of Life for 1.5 Million Americans Affected by Lupus - 01/28/2009 07:25 AM

The Lupus Foundation of America, Inc. (LFA) is pleased to report continuing progress was achieved in 2008 in efforts to combat lupus, a chronic autoimmune disease which affects an estimated 1.5 million Americans and at least five million people worldwide. Teams of researchers announced important findings which provided clues to the underlying genetic origins of lupus, several companies released clinical data on studies of potential new treatments, and Congress reaffirmed its commitment to provide greatly expanded federal support for lupus research and education programs.

Multiple studies provided insight into new ways to manage and treat lupus, and prevent its often-devastating consequences. National media coverage of lupus continued to rise and, and work neared completion on the first-ever Advertising Council national lupus public education campaign, scheduled to launch in early 2009.

Public and Private Support for Lupus Research and Education Grows

The largest sources of funding for lupus research are the federal government and the pharmaceutical and biotechnology industries. In 2008, the LFA worked with elected officials and industry leaders to further expand investment in research on lupus, while the Foundation expanded the scope of its own lupus research program.

Congress appropriated millions of dollars in FY 2009 for lupus research and education programs funded through the Department of Health and Human Services, National Institutes of Health, Centers for Disease Control and Prevention, and Office on Women’s Health, and the Department of Defense’s Peer Reviewed Medical Research Program.

Private funding for lupus research also grew in 2008, as evidenced by the growing number of clinical research studies to test potential new, safe and effective treatments for lupus by pharmaceutical and biotechnology companies. Several companies announced preliminary data from their clinical studies. While some trials did not reach targeted endpoints, data gathered from these studies provide insight into possible new ways to design clinical trials and select patients for studies.

The LFA in 2008 provided another $1.1 million to support its own national research program, “Bringing Down the Barriers.” To date, the LFA and its chapters have provided more than $20 million to support approximately 400 investigators at 100 academic and scientific institutions. The LFA has greatly expanded the scope of its program to support research initiatives in novel pilot approaches, pediatric/adolescent lupus, lupus in males, mid-to-late stage translational research, and studies on the use of adult stem cells in lupus.

Although a number of scientific challenges lay ahead, developments in 2008 brought renewed hope that a better quality of life for people with lupus and their families is possible within the not too distant future.

The LFA has compiled a list of ten important advances in lupus research and education that occurred during 2008. They are as follows:

#1 - Researchers Identify Genes Linked to the Underlying Causes of Lupus

International teams of investigators identified four new genes that are strongly associated with lupus, and ten others that are possible risk factors. A second research team identified regions on two chromosomes that may contribute to individuals being predisposed to lupus. The findings may one day make it possible to identify who may be at risk for lupus and prevent its consequences.

# 2 - Congress Provides Millions of Dollars for Lupus Research and Education

The U.S. Congress provided another $3.1 million to fund lupus epidemiological research through the Centers for Disease Control and Prevention (CDC) for the National Lupus Patient Registry. Congress also authorized funds to support studies on lupus and lupus biomarkers through the Department of Defense Peer Reviewed Medical Research Program. This initiative has provided more than $6 million for lupus research. Additionally, Congress provided funding for the National Institutes of Health (NIH), which provided an estimated $84 million for lupus research in 2008.

#3 - Industry Expands Efforts on Drug Development Providing Hope for Better Quality of Life

Biotechnology and pharmaceutical companies stepped up efforts in 2008 to develop new treatments for lupus, with several releasing data on clinical studies of potential new treatments. Companies working to develop new therapies for lupus include Amgen, Bristol-Myers Squibb, Dynavax/GalxoSmithKline, Genelabs Technologies, Genentech/Biogen Idec, Hoffmann-La Roche, Human Genome Sciences/GlaxoSmithKline, La Jolla Pharmaceutical Company/BioMarin, MedImmune/AstraZeneca, Merck Serono, Roche Pharmaceuticals, UCB, Vifor Pharma/Aspreva Pharmaceuticals, and Wyeth Pharmaceuticals.

#4 - LFA Establishes the Michael Jon Barlin Pediatric Research Program to Address Specialized Issues Related to Lupus in Children, and Expands the Scope of its Lupus Research Program

In 2008, the LFA became the only national voluntary health organization with a research program specifically dedicated to studies on lupus in children when it launched the Michael Jon Barlin Pediatric Research Program. The LFA awarded $1.1 million in research grants and fellowships last year to advance the science of lupus by supporting studies in novel pilot approaches, pediatric/adolescent lupus, lupus in males, and mid-to-late stage translational research. Additionally, LFA supported studies on stem cell research, cutaneous (skin) lupus, kidney disease and lupus, and the neuropsychiatric effects of lupus, and awarded five student summer fellowships to foster an interest in the field of lupus research.

#5 - Study Data Provides Evidence of New Benefits for Existing Lupus Treatments

Clinical research data released in 2008 showed that lupus patients treated with hydroxychloroquine, used most often to treat lupus skin and joint problems, were less likely to have kidney disease, had less severe disease, and required lower doses of corticosteroids than patients who did not receive the drug. Another study showed that two therapies, mycophenolate mofetil (MMF) and intravenous cyclophosphamide (IV CYC) appeared to be safe and effective for treatment of lupus nephritis (LN) in adolescents.

#6 - Studies Provide Hope and Tools for Successful Lupus Pregnancies

Researchers found a relationship between the levels of a protein called sFlt-1 and preeclampsia in pregnant women with lupus, allowing for earlier management and monitoring by specialists in high-risk obstetric care. Preeclampsia is characterized by high blood pressure and large losses of protein in the urine and is dangerous for both the mother and the baby. Another study found intravenous immunoglobulin infusion (IVIg) to be safe and effective for women with lupus who had consecutive miscarriages.

#7 - Second International Conference on Lupus Flares Addresses Gaps in Clinical Research

More than 80 international scientific thought leaders in lupus continued their work in 2008 to address an important gap impeding lupus drug development and approval during the Second International Conference on Lupus Flares organized by the LFA. Experts discussed modifications to tools used to monitor disease activity and progression. They also worked to finalize a consensus definition of a lupus flare. The number of flares and time to flare can be used as primary endpoints in clinical studies; however, presently there is no accepted definition of a lupus flare.

#8 - LFA Launches Center for Clinical Trials Education (CCTE) to Educate People Interested in Lupus Clinical Studies

The LFA launched the Center for Clinical Trials Education (CCTE) as a resource for people with lupus and their families who are considering participation in a clinical trial. The CCTE website (www.lupus.org/clinicaltrials) serves as a national clearing house of information specific to lupus clinical trials and volunteer participation. The website includes a lupus trial-locating service and provides information about clinical trials in English and Spanish tailored to various populations of people with lupus.

#9 - Lupus Advocates Generate Increased Attention and Resources for Research and Education Programs

More than 300 individuals with lupus, their families, and health professionals from 37 states came to Washington as part of the LFA’s Tenth Annual Advocacy Day and met with 200 Members of the United States Congress and staff members. In 2008, Congress provided support for legislative priorities advocated by the LFA, including expanded funding for lupus research and education programs.

#10 - Public Awareness Initiatives Improve Understanding of Lupus and its Impact on Individuals and Families

The LFA was named the Founding Partner with the U.S. Department of Health and Human Services Office on Women’s Health (OWH) on the first-ever Advertising Council national lupus public awareness campaign, which is scheduled to launch in early 2009, reach an estimated 100 million U.S. adults, and generate $30-$50 million annually in free media exposure for lupus. Media coverage for lupus in 2008 included a feature on lupus as part of a week-long series about chronic diseases broadcast on NBC Nightly News. ABC News Now, CNN, and Accent Health also produced feature reports on lupus.

The Lupus Foundation of America Patient Education Committee has reviewed and approved a number publications and other materials for use in educating individuals and families about lupus and its health effects.

The LFA's "Seal of Approval" List (PDF - 16 pages)

Items with code # are available for purchase online through the LFA store or by calling toll-free 1-866-4-THE-LFA (866-484-3532). LFA chapters also offer approved books for sale.

Preventing renal damage in patients with systemic lupus erythematosus (SLE) may be critical to lowering their mortality rate, according to a new report.

Researchers at the University of Alabama in Birmingham found that the renal domain of the Systemic Lupus International Collaborating Clinics (SLICC) damage index is the most important predictor of death after adjusting for poverty -- a strong predictor of mortality.

Damage accrual in SLE patients is an independent predictor of mortality, but which of the 12 domains of the SLICC damage index is the most important has been unknown. The investigators studied 635 SLE patients aged 16 years or older. Of these, 570 (89%) were women who had a mean age of 36.5 years. All subjects had disease duration of five years or less at enrollment. Disease activity was assessed by the investigators using the Systemic Lupus Activity Measure-Revised (SLAM-R) at diagnosis and damage at the last visit.

Of the 635 patients, renal damaged developed in 126, cardiovascular damage developed in 63, pulmonary damage developed in 48, and peripheral vascular damage developed in 34. A total of 97 patients died. After adjusting for poverty, the investigators found that renal damage was the most important predictor of death within the damage index.

“We found that the renal domain was even more important that the cardiovascular domain,” said study co-investigator Graciela Alarcón, MD, MPH, a professor of medicine, and a member of the Lupus Foundation of America's Medical-Scientific Advisory Council.

The findings, presented here at the American College of Rheumatology annual meeting, should be of particular interest to nephrologists because they highlight the importance of preventing renal damage with agents such as hydroxychloroquine, which originally was used to prevent and treat malaria, Dr. Alarcón said.

“Nephrologists need to realize that although hydroxychloroquine was dismissed in the past, it could actually protect the patient from renal damage, which we have now found is a harbinger of worse things to come,” she said.

Source: January 2009 Issue of Renal And Urology News

Register for LFA's 2009 Advocacy Day on Capitol Hill March 2-3 - 01/21/2009 08:47 AM

It was 50 years ago that the U.S. Food and Drug Administration (FDA) last approved a drug to specifically treat lupus. The Lupus Foundation of America (LFA) invites you, your friends, and family members to join with us and lupus advocates from across the country in Washington, DC for the 11th annual Advocacy Day. Together we can change the coming years by advocating for funding that will lead to safer, more tolerable, and effective lupus treatments.

Registration Fee: $35
(includes advocacy materials, select meals, and an event recognition gift)

Register for LFA's Advocacy Day Here:
LFA's 2009 Advocacy Day on Capitol Hill

Event Schedule:
Monday, March 2 -- Meet & Greet and Advocacy Training

Location:
Washington Plaza Hotel
10 Thomas Circle, NW
Washington, DC

Make Your Hotel Reservation Here:
A block of rooms has been secured by the LFA for $239 (plus taxes) per night. To make a reservation, go to Hotel Reservations for LFA's 2009 Advocacy Day on Capitol Hill, and enter the code "lupus" to secure one of the newly renovated rooms.

If you have any questions, contact Sara Chang at chang@lupus.org or by phone at 202-349-1169.

For more information, please visit: http://www.lupus.org/advocacy.

Lupus Now Magazine Wants Your Input / Newly Diagnosed Chat Transcript Posted Online - 01/16/2009 09:09 AM

When you have an unpredictable disease like lupus, it can be comforting to know that vast stores of medical information and people who really get what you’re going through are just a couple of mouse clicks away on the Web.

In the "My View" column in the Summer 2009 issue of Lupus Now, we want to print your answers to this question:

"How will you celebrate 'Happiness Happens Month' in August?"

Email your response to LupusNow@lupus.org. Make sure your answer is 30 words or less. Please include your first name and last name in the email, and write "Happiness Happens Month" in the subject line of your email. We'll print as many of the responses as we can.

Your deadline is April 1!

Lupus Foundation of America's "Newly Diagnosed / Living with Lupus" Chat Transcript Posted Online

Thanks to everyone who attended the "Newly Diagnosed / Living with Lupus" webchat hosted by Dr. Don Thomas on Wednesday. It went really well. A copy of that chat transcript has now been posted online.

And, we hope you will join us for the February 11, 2009 webchat. The topic is "Cardiovascular Health & Lupus," and it's hosted by Dr. Amy H. Kao.

Mark your calendars for that.

Guest Blogger Jessica Southern Shares Her Experience On the Rose Parade Float - 01/12/2009 08:37 AM

Morning everyone.

I'm excited to turn blogging duties for today over to Jessica Southern, one of 2 teens with lupus who recently rode on Kaiser Permanente's float -- Propel Your Dreams -- in the 120th Annual Tournament of Roses Parade on January 1, 2009.

Enjoy Jessica's story.

My Rose Parade Experience by Jessica Southern

My story begins when I was diagnosed with lupus. It was such a shock, but I figured God would take care of me. I believe my faith in Christ has a lot to do with how I am dealing with lupus. I have been really lucky with what I can still do. I have had to cut back a lot, like doing things with friends and not staying up as late. I am willing to make those sacrifices to keep healthy.

When I was asked if I wanted to be on the Kaiser Rose Parade float, it was like you want “me” to be on the float. So I said, “Yes” and the fun began to happen. Our first event was a “Family Fun Day” where all the float riders were able to meet each other and the Rose Queen and her Princesses and the families of Kaiser employees. We were give the option to help decorate the float, so my family and one of my best friends, Andie, went to decorate. My brother Joshua, Andie and I decorated a hamster wheel. When I first saw the float, I wanted to be in the hamster wheel. So, even though I rode in the row boat for the parade, I got to decorate the wheel. At the end of the day, I felt like a flower because the strawflowers kept falling on me and stuck in my hair. It was a long but enjoyable process.

New Year?s Eve was judging day and it took the judges a long time to get to our float. When it was our turn to be judged, we had to pretend we were on the parade route and not look at the judges. Do you know how hard it is to look at the “crowd” and not look at the judges who were standing directly in front of us? Well, it was hard.

New Year?s morning, I was so excited; the big day was finally here and I was going to be in the Rose Parade! The families of the float riders stayed at a hotel so we would be able to meet at 5 a.m. in the lobby for our shuttle to the float. The float riders did a live broadcast on Channel 2 News at 6 in the morning. Most of our parents saw us. Then we waited for the parade to begin. When it all came around we got wristbands for security reasons and boarded the float. I was so excited. My heart felt like it was going to burst. I remember thinking, “this is me, boarding the actual Kaiser float for the Rose Parade!” It was just so cool and unbelievable, plus it was definitely a once in a lifetime experience.

During the parade route, I saw Taylor and Vanessa (some friends from my Color Guard team). They were just screaming my name and that was probably one of the best moments on the float. I didn?t see my parents, but they said that they saw me. My Grandma was able to come which was totally awesome. Along the parade route, a few audience members were shouting out to us saying, ”Survivors” or “Fighters” because they believed in us and knew we all had serious medical conditions.

Being on the float was fun, but not all of it was. Sure, you got to do a once in a lifetime experience with people who have some of the same problems as you, and being able to ride on a float in front of a crowd and cameras was unbelievable. The wait to some of the activities was torture and I was just so excited that I wanted it to start. Then when you were on the float for two hours, your butt starts to hurt cause you are sitting on a hard surface and your cheeks start to hurt from all the smiling.

The next few days after the parade I felt like a superstar. I was in the newspaper with a big picture. At church, all my friends saw a clip of me on the float and were so proud. It is nice knowing that so many people care about me.

I know my family loves me and supports me through thick and thin, and lupus is definitely thick, but they have helped me overcome it. My family gives me the strength to carry on.

Join the LFA's Webchat "Newly Diagnosed / Living with Lupus" on Wednesday, January 14. - 01/09/2009 09:02 AM

Reminder -- the Lupus Foundation of America's Webchat is Wednesday afternoon, January 14, at 3 p.m. Eastern Time.

The LFA welcomes Dr. Don Thomas, who will serve as the guest expert for the Newly Diagnosed / Living with Lupus webchat.

This is your opportunity to ask questions and learn from a lupus expert. Dr. Thomas is certified by the American Board of Internal Medicine in both rheumatology and internal medicine, and is a Fellow of the American College of Physicians (FACP) and an active Fellow Member of the American College of Rheumatology (FACR).

You can submit a question in advance here.

We hope you can join us Wednesday afternoon. To do so, you can log in to the live chat here.

As always, copies of all chat transcripts are posted online within a day or 2 of the chat. Visit here to read the LFA's previous chat transcripts.

Survey Indicates Nearly Half of All Women Fail to Seek Medical Care Due to Health Care Costs - 01/08/2009 03:48 PM

On December 2, 2008, HealthDay reported, "Women are cutting back on health care due to costs, according to a Harris Interactive poll released Tuesday by the National Women's Health Resource Center." The poll revealed that "almost half the women failed to seek medical care in the year before the survey," saying that they cut back on "doctor visits, recommended medical procedures and medication." A breakdown by demographic showed that "58 percent of Hispanic women" reported skipping health care, compared to "43 percent of white women and 42 percent of black women."

Beth Battaglino Cahill, executive director of the center, noted that over "40 percent of the ... women polled said their health had declined in the past year, with most citing stress and weight gain as the cause."

Of those who "had skipped needed medical care," one-fourth "believed their illnesses lasted longer as a result," WebMD added. Still, the poll showed that women were "least likely to put off doctor visits for their children," with only four percent responding that "they had put off taking their children to the doctor because of the cost." The poll included "754 adult women with and without health insurance chosen to reflect the racial and socioeconomic composition of women in the U.S."

The survey also "focused on women's attitudes toward aging," with "four out of five women" responding that "they were emotionally prepared to grow older." Furthermore, data showed that "a slightly lower number felt they had adequate knowledge of issues related to aging."

To read the entire articles, visit HealthDay and WebMD.

LFA Comments: It is important for people with lupus to not put off visits with their doctor because lupus requires close monitoring by a physician, especially for individuals with kidney involvement. Most patients won’t notice problems until significant damage has occurred.

We'd all love to laugh -- loud and long -- like Mary Poppins' Uncle Albert. Although lupus is not the most obvious giggle-inducer in the world, if you can find room for some comedy in your life, it’s likely to benefit you -- and your lupus.

Colin Stokol, M.D., a neurologist and psychiatrist at Cedars–Sinai Medical Center in Los Angeles, is a big fan of humor. "First, there is a feeling of belonging to a community when a patient finds humor with others," he notes. "Second, the action of deep laughter has a physical benefit: When you laugh, you exercise your respiratory muscles, spine, upper body and face. And finally, there is a belief among medical professionals that laughter prompts the body to release endorphins, which are hormones that create a sense of well-being."

People find different ways to get those endorphins going, from playing practical jokes to watching an old "Three Stooges" episode. Wes Daniel of Midwest City, OK, was diagnosed with lupus in 1991. When he was in the hospital receiving chemotherapy, a good chuckle was his frontline defense against the disease.

"My sense of humor is probably what got me through the bad stage," remembers Daniel. "Once when I was going down for a treatment, I got one of the male nurses to give me an IV pump with a dress and two inflated balloons. I drove it up and down the hall of the hospital and called it my girlfriend."

Indeed, humor appears to play a powerful role in coping with chronic illness. "There have been about 20 solid scientific studies showing humor and laughter can increase tolerance to or reduce the feeling of pain in people with cancer and other ailments," says developmental psychologist Paul McGhee, Ph.D., of Wilmington, DE.

In addition to making people happy, humor helps people with lupus face their day-to-day challenges. "A lot of patients are very heroic and maintain a wonderful spirit," notes rheumatologist Gary Gilkeson, M.D., of the Medical University of South Carolina in Charleston. "Having a positive attitude makes all the difference in the world."

Laughing Matters
For the latest tips and resources on health-related humor, visit the Association for Applied and Therapeutic Humor at http://www.aath.org/.

For more insight from psychologist Paul McGhee, check out http://www.laughterremedy.com/.

Taken from the Summer 2004 issue of Lupus Now magazine

I have a lupus blog I'd like to share with you. It is called LuAnne's Life Living with Lupus. It's written by a woman -- LuAnne -- who lives in South Carolina.

Here's a little bit about LuAnne ... in her own words.

"This is just a story about me and my life here in South Carolina. I'm a wife and mother of two young adults who are in their 20s. I am happy despite living with many chronic, sometimes painful and life threatening diseases."

If you have some time, swing by LuAnne's Life Living with Lupus and say hi to LuAnne.

That's your lupus scoop for today. Happy 2009 to everyone!

Two Teens with Lupus Win Spots in the Rose Parade with Kaiser Permanente - 12/31/2008 02:15 PM

Two southern California teens living with lupus will be among the riders aboard the Kaiser Permanente float in the 120th Annual Tournament of Roses Parade on January 1, 2009. Nathalie Gonzales and Jessica Southern will appear on the float with 12 other riders, ages 12 through 18, who are battling life-threatening diseases, including lupus, cancer, and sickle-cell anemia. Kaiser Permanente Health Plan physicians nominated the teens based on their positive attitudes and persevering spirits.

With the theme, "Propel Your Dreams," the float design centers on Kaiser's ongoing health message, "Thrive." The float is a colorful and imaginative flying vehicle powered by inspiring children who cycle, row, and jog above floral clouds of solid roses.

"We are excited that these girls have been chosen to have this once in a lifetime experience," said Sandra C. Raymond, LFA President and CEO. "We appreciate the efforts of Kaiser Permanente, Nathalie, Jessica, and their parents to raise awareness of lupus in children."

Although not as common in children as it is in adults, lupus in children may develop early and tends to be more severe with multi-organ system involvement. While there have been no drugs approved by the U.S. Food and Drug Administration specifically for lupus in 50 years, research and advances in the science of lupus has improved the future for children and teens affected by lupus. There is hope on the horizon that young teens, like Nathalie and Jessica, won't have to suffer and wait another 50 years for new treatments. Today, there are more lupus treatments in development than ever before.

The Lupus Foundation of America (LFA) is on the front lines of the effort to advance the science and medicine of lupus and to bring down barriers that have impeded progress in lupus research. The LFA has established the Michael Jon Barlin Pediatric Lupus Research Program to enhance key understanding of research issues specific to lupus in children and identify novel, innovative basic/translational/clinical pilot projects. Earlier this year, the LFA launched its new Center for Clinical Trials Education (CCTE) through its website as a resource for people interested in learning about and joining lupus clinical trials.

On January 1st, turn on your TV and look for Nathalie Gonzales and Jessica Southern on Kaiser Permanente’s Rose Parade float!

In the following weeks, Nathalie and Jessica's experience in the Rose Parade will be featured on the LFA website, www.lupus.org. They will be documenting their experience on the float with video and pictures that will be posted on the LFA website and our blog "On the Road to A Cure."

Read more about lupus and children, teens, and young adults.

Dear Friends:

As you honor your loved ones this holiday season, consider sending a meaningful gift of hope. Select from three beautiful eCards, designed by individuals who have a connection to lupus, and make a gift to LFA in honor of your loved ones and friends.

Send Your eCard today!

Your special message will be included on your eCard, and you will receive a receipt for your tax-deductible gift.

What a special way to honor friends and loved ones during the holidays. As always, thank you for your continued support of our mission to find the causes and cures for lupus, and to provide life-enhancing services and support to all people affected by this disease. I wish you and yours peace, health and happiness in 2009.

With warm wishes,

Sandra C. Raymond
President & CEO
Lupus Foundation of America

Morning all.

The 2009 schedule of lupus-related Webchats has been posted to the lupus.org website. Dates and guest speakers are still being finalized, but the topics have been confirmed. And here they are ...

2009 College Scholarships for Students with Parents with Disabilities - 12/19/2008 02:37 PM

Through the Looking Glass and its National Center for Parents with Disabilities and their Families are pleased to announce new scholarships specifically for high school seniors and college students who have parents with disabilities. These scholarships are part of Through the Looking Glass’ new federal grant (New National Center for Parents with Disabilities and their Families). Please note that these are new awards and have different application procedures than in the past. There are two separate scholarship awards, and each has separate eligibility requirements:

All application materials must be completed and postmarked by Monday March 16, 2009.

Selection criteria for all scholarships include academic performance, community activities and service, letters of recommendation and an essay describing the experience of growing up with a parent with a disability.

These Scholarships are also part of a research study on young adult children of parents with disabilities. As explained in the Consent Form in the Application, you may be willing to participate in an optional survey about young adult children of parents with disabilities. The additional information you submit on this survey will not affect your scholarship chances and will not be disclosed to anyone outside the project researchers; all identifying information will be removed. If you consent to participate in this optional survey, we will email you the survey after we have received your completed application.

To learn more, please visit the National Center for Parents with Disabilities and their Families website.

I am reaching out to you in this busy season to say thank you for your support of the Lupus Foundation of America (LFA). Your trust and investment in LFA has enabled us to fund more promising research, to educate more health professionals, and to provide life-enhancing services to thousands of families affected by lupus.

Today, there is great cause for optimism. There are more lupus researchers and pioneers in biotech and pharmaceutical companies than ever before working to develop new treatments for lupus. We believe through continued partnerships on all fronts we can accelerate the pace of discovery and ultimately end the suffering caused by lupus.

Because of support by dedicated partners and contributors, we have given hope to so many lupus patients, friends and families by launching the Center for Clinical Trials Education, a comprehensive clearinghouse of information to educate people about participating in lupus clinical trials; tripling funding for the Centers for Disease Control and Prevention (CDC) to fund the first-ever comprehensive study to determine how many people have lupus in the U.S.; awarding new grants to 19 leading lupus researchers at major U.S. medical centers; and conferring first-time awards for new lupus research, including male and pediatric research.

No gift is more meaningful than the gift of hope. I ask that you consider making a gift that will help find better treatments and a cure for lupus. Your most generous tax-deductible gift now will help sustain the LFA’s programs in research and education, life-saving work that we must not hold back, even in these trying times.

In this holiday season, your gift will light the way for the millions of women, men and children living with lupus. We join together to wish you, and those dear to you, health, peace and joy.

Thank you for caring and for your generosity.

Sincerely,

Sandra C. Raymond
President and CEO

LFA's Depression & Lupus Chat Transcript Posted Online - 12/12/2008 07:41 AM

Thanks to everyone who attended the "Depression & Lupus" webchat hosted by Dr. Al Herzog on Wednesday. It went really well. A copy of that chat transcript has now been posted online.

And, we hope you will join us in the new year for the January 14, 2009 webchat. The topic is "Newly Diagnosed / Living with Lupus," and it's hosted by Dr. Don Thomas.

Mark your calendars for that.

Get Some Great Holiday Deals / Bargains at LFA's Online Store - 12/10/2008 09:49 AM

Lots of great things to share with you this morning, so let me jump in.

Shop the Lupus Shop's Clearance Aisle for Great Holiday Bargains

If you shop now, you can save 50% on cell phone charms, purple ribbon magnets and the "On a Seasonal Note" holiday CD.

Shop our clearance aisle today.

Give a Gift Subscription to Lupus Now Magazine

Celebrating its 5th anniversary, Lupus Now magazine makes a great gift for loved ones who are living with lupus.

And if you act now, you can subscribe to Lupus Now for 2 years for only $30 -- that's a 40% savings! Follow the link below, and select "2 year (domestic) - 30.00" from the drop-down menu.

Give a gift subscription to Lupus Now.

(new domestic subscriptions only)

Reminder: Depression and Lupus Webchat This Afternoon at 3 p.m.

Don't forget ... Dr. Herzog will lead today's Webchat on Depression & Lupus. Learn more about the chat here.

November 20, 2008 marked the fiftieth anniversary of the last time the U.S. Food and Drug Administration (FDA) approved a treatment for lupus.

In this brand-new video, Lupus Foundation of America (LFA) Medical Director Dr. Joan Merrill and LFA Medical-Scientific Advisory Council Chair Dr. Gary Gilkeson discuss this urgent issue and what LFA has been doing to bring down barriers to lupus drug development.

LFA to host Depression & Lupus Webchat on Wednesday, December 10 at 3 p.m. ET - 12/05/2008 07:40 AM

Reminder -- the Lupus Foundation of America's Webchat is Wednesday afternoon, December 10, at 3 p.m. Eastern Time.

The LFA welcomes Dr. Al Herzog, who will serve as the guest expert for the Depression & Lupus chat.

Dr. Herzog is a Professor of Clinical Psychiatry at the University of Connecticut School of Medicine. He has written on a wide variety of medical topics ranging from psychiatry to organized medicine and to the application of complexity science to the practice of medicine. He received his medical training at the University of Pennsylvania, was a resident in Internal Medicine at Hartford Hospital and received his psychiatry training at Yale. He is Board Certified in Psychiatry and is a Distinguished Fellow in the APA as well as the Society for Clinical and Experimental Hypnosis.

This came across my desk recently and I wanted to share it with you.

A few years ago, Jerry Norton retired from the Air Force after 22 years. To stay active, he took up running. He really enjoyed it, and then decided to take on his first marathon, which he did for charity.

Then Jerry decided to challenge himself further … in 2007 he volunteered at the Las Vegas Silverman triathlon, which is a 1.2 mile open water swim, 56 mile bike ride and a 1/2 marathon. A total of 70.3 miles. After volunteering, he decided that he could do that and immediately signed up for the 2008 event, even though he’d never done a triathlon in his life. Jerry didn't even have a bike, and he hadn't swam in 25 years.

Jerry knew an undertaking that big needed an equally big motivator to keep him from coming up with excuses to quit. His wife had recently been diagnosed with lupus after about a year of misdiagnosis from numerous doctors. That's when he made the decision to do the triathlon for lupus.

“I know what she's been going through. There was no way I was not going to finish the event, knowing I was doing it for a good cause,” said Jerry. “It seems most people are totally unaware of lupus. I found myself … answering questions and raising awareness about lupus.” He continued “I even had a flier for a Walk for Lupus Now event put on by the Lupus Foundation of America. I made some calls, sent some emails and set up a fund-raising goal of $3,000.”

After hundreds of miles of training (swimming, biking & running), the day of the event finally arrived. Thunderstorms delayed the start of the swim for 1 hour. The bike ride was windy, rainy and hilly. Then the final leg -- the run -- was another brutal element.

It was the toughest thing Jerry had ever done but “it was worth every ounce of sweat to see my wife and my friends at the finish line, supporting me and the Lupus Foundation of America.”

He added “several friends were there, representing families who had lupus. They couldn't thank me enough for helping the cause. My goal of $3000 was accomplished, even with our country’s tough economic times. I still wish I could have done more. There's always next year!”

The Lupus Foundation of America (LFA) brings increased attention to the need for safer, tolerable and effective lupus treatments through its Zero in 50 campaign. Thursday, November 20, 2008 marked an unfortunate anniversary. It was 50 years ago the U.S. Food and Drug Administration (FDA) last approved a drug to specifically treat lupus.

Today, there is great cause for optimism. There are more lupus researchers and pioneers in biotech and pharmaceutical companies than ever before working to develop new treatment for lupus. We believe through continued partnerships on all fronts we can accelerate the pace of discovery and ultimately end the suffering caused by lupus. The LFA is on the front lines of this effort to advance the science and medicine of lupus and to bring down barriers that have impeded progress in lupus research.

Read more about this new campaign, read stories from people living with lupus and what 50 years without a new lupus drug means to them, and learn how you can take action.

50 Years Without a New Lupus Drug! What Does it Mean to You? - 11/13/2008 10:41 AM

Thursday, November 20, 2008 will mark an unfortunate anniversary. On that date, it will be 50 years since the U.S. Food and Drug Administration (FDA) last approved a drug specifically to treat lupus.

A half century is a long time to be waiting for safer and more effective treatments for a disease that affects an estimated 1.5 million Americans and at least five million people worldwide.

We need to let Members of Congress know that they must provide more funds to conduct the basic research that pharmaceutical and biotechnology companies need to develop new treatments for lupus. At the same time, we want to express our collective gratitude to the hundreds of researchers and industry executives who have been working tirelessly for many years to bring scientific discoveries from the bench to the bedside.

So what does 50 years without a new lupus drug mean to you?

No one is more qualified to speak out about the need for better treatments than individuals with lupus who have no option but to keep using the old drugs that were approved for lupus when Dwight Eisenhower was still president and can have side effects worse than the primary disease.

How can you help? Share your story!

Please help by sending a two part email message to 50years@lupus.org as soon as possible but before November 20.

In the first part of the email, write a short message (about 150 words) that explains to Members of Congress what 50 years without a new lupus drug means to you. In the second part of the email, write a short note of appreciation that explains to researchers and industry executives how grateful you are for their efforts to develop new safe and effective treatments for lupus.

Please include your first and last name and your city and state in your email. If possible (but certainly not required), please also attach to your email a clear photo of yourself so we can personalize your message.

We will use your email message in several ways to help advance the science of lupus!

We Need Your Help Now! Act Today!

Send your message and photo today (or by November 20) to 50years@lupus.org. Then, on Thursday, November 20, visit our website to read the messages and learn how the LFA is taking steps to address this urgent problem.

Ask Others To Get Involved!

Please share this request with others who also have been waiting as long as five decades for a new lupus treatment! Together, we can raise awareness of this issue and urge our elected leaders to provide increased funds for research to find ways to develop safer and more effective targeted therapies for lupus.

LFA to host Healthy Eating & Weight Management & Lupus Webchat on Wed., November 12 at 3 p.m. - 11/07/2008 08:21 AM

Reminder -- the Lupus Foundation of America's Webchat is Wednesday afternoon, November 12, at 3 p.m. Eastern Time.

The LFA welcomes Dr. Laura Coleman, who will serve as the guest expert for the Healthy Eating & Weight Management & Lupus chat.

Dr. Coleman is a registered dietitian who received her Ph.D. in Nutritional Sciences from Tufts University School of Nutrition. Her early work focused on metabolic changes in people with rheumatoid arthritis, and she later began work on metabolic changes in people with lupus. She is a member of the Lupus Now Advisory Board for the Lupus Foundation of America (LFA), as well as a member of the Materials Review Panel of the LFA Education Committee. She has published numerous articles on diet and rheumatic disease and is the editor of a new textbook entitled Nutrition and Rheumatic Disease, published by Humana Press.

Dr. Coleman's areas of interest include nutrition and childhood obesity.

You can submit a question in advance here.

We hope you can join us Wednesday afternoon. To do so, you can log in to the live chat here.

As always, copies of all chat transcripts are posted online within a day or 2 of the chat. Visit here to read the LFA's previous chat transcripts.

Check Out the Updated Advocacy & Legislation Section on Lupus.org - 11/05/2008 09:02 AM

Good morning everyone ...

Hope this finds you doing well. I wanted to highlight an updated section of content on the lupus.org website ... the Advocacy & Legislation area.

The LFA Government Relations team is responsible for federal, state, and international legislation and issues that affect people with lupus. They work with Members of Congress at the federal level, and with LFA chapters at the state level to raise awareness and advocate for research funding.

Let me share some of those updates with you.

Legislative Issues & Successes
There are many important government relations issues that affect people with lupus. They include: the Lupus REACH Amendment; Fluorescent Light Bulbs; H.R. 6331, the Medicare Improvements for Patients and Providers Act; and Appropriations for Lupus (CDC, OWH, and DoD).

You can also read about the Legislative Priorities for FY2009.

Become an e-Advocate
Take action on issues that matter and stay informed about important policy issues.

Advocacy Day
Share your story with Members of Congress in person. Come to Washington, DC, each spring!

Advocacy Toolkit
The Advocacy Tool Kit provides information for LFA e-Advocates on how to be a voice on Capitol Hill for people with lupus and their families.

State Advocacy
Learn about state and local advocacy initiatives.

That's your lupus scoop for today. Have a great Wednesday.

Some reports suggest that there may be enough UVB radiation in fluorescent light bulbs to cause photosensitivity in people with lupus. Are you one of the people affected by fluorescent light bulbs? Please share your story with us at advocacy@lupus.org.

Designate the LFA (#10566) Through the Combined Federal Campaign - 10/29/2008 09:23 AM

Federal and postal employees, as well as military personnel and retirees, can contribute to the Lupus Foundation of America through the Combined Federal Campaign (CFC). The LFA is listed in the Community Health Charities federation for National Voluntary Health Agencies.

When you complete your CFC pledge card, designate the Lupus Foundation of America Agency #10566 to receive your gift. Your contribution will be used to support LFA research, education, and support programs. You can learn how your donations are used here.

On behalf of the 1.5 million Americans with lupus, we extend our sincere appreciation and gratitude for your generous and loyal support.

Lupus Foundation of America Attends the Annual American College of Rheumatology Meeting - 10/27/2008 03:52 PM

The American College of Rheumatology (ACR) annual meeting is being held in San Francisco, CA, October 24-29, 2008. As in years past, staff from the Lupus Foundation of America are attending this meeting, to hear the latest in lupus-related research.

One of the first things to come from the meeting, that I can share with you, is in regards to epratuzumab. Study results show epratuzumab provided clinically meaningful reduced disease activity in patients with lupus. To learn more, read the press release.

As other research findings and other news from ACR become available, I will share that with you. And within the next several days, check back to read a recap of the meeting's highlights.

Congress Reaffirms Support and Continues Funding For Lupus Research, Education and Patient Registry - 10/24/2008 10:12 AM

Congress has again provided funding for critically important lupus research and education programs advocated by the Lupus Foundation of America. President Bush recently signed the Consolidated Security, Disaster Assistance, and Continuing Appropriations Act of 2009 (H.R. 2638). This legislation continues funding for important lupus programs, including basic, clinical and epidemiological research, and public education and awareness initiatives.

These programs include:

Centers for Disease Control and Prevention (CDC)

Department of Health and Human Services Department Office on Women’s Health

The U.S. Department of Defense Peer Reviewed Medical Research Program (PRMRP).

Funding for lupus research and education programs supported through federal agencies has been a long-recognized priority for LFA advocacy efforts. “Each year, LFA brings more than 350 lupus advocates to Washington, including people with lupus, their families, physicians, and lupus researchers, to advocate for more funding for lupus research and education programs,” said Sandra Raymond, LFA President and CEO.

“LFA-led advocacy initiatives have opened new sources of much-needed funds to support research on lupus, provide for improved government services for those living with lupus, and increase public awareness to improve early diagnosis and treatment of lupus. The LFA will continue to work with congressional and administrative leaders to further expand federal support for lupus initiatives so people with lupus can have hope that more effective treatments and, ultimately, a cure can be found.”

Lupus Foundation of America Awards More Than $1.1 Million in New Research Grants - 10/20/2008 09:11 AM

The Lupus Foundation of America (LFA) has awarded more than $1.1 million in new research grants and fellowships as part of its ongoing commitment to bringing down the barriers in developing new treatments and finding a cure for lupus. Lupus is a disabling and life-threatening autoimmune disease that affects approximately 1.5 million Americans -- that’s enough people to fill 30 baseball stadiums.

This year's LFA research grants will support innovative research initiatives in pediatric/adolescent lupus, lupus in males, and mid-to-late stage translational research. Funds for these initiatives were generously granted to the LFA through the Wallace H. Coulter Foundation in memory of Michael Jon Barlin, who in 2006, at the age of 24, passed away after a long battle with lupus. Additionally, two grant awards will support studies on the use of adult stem cells in lupus. Funds for these awards were provided by the Cooper Family Foundation.

Other areas of research supported by the LFA National Research Program include cutaneous (skin) lupus, kidney disease and lupus, and the cognitive effects of lupus. The LFA also awarded five student summer fellowships to foster an interest in the field of lupus research.

There has not been a new treatment approved for lupus in almost 50 years. Medical and scientific breakthroughs in research lead to new treatments, and without research people with lupus will continue to wait. The LFA received more than 77 grant applications, totaling an estimated $7.8 million in requests for lupus research funding. In 2008, the LFA National Research Program has awarded funding to 13 institutions and 19 researchers in its continuing effort to overcome the challenges that have hindered lupus research in the past.

At least five million people worldwide have a form of lupus, a disease which causes the immune system to go awry and attack the body's own tissue and organs, resulting in debilitating and sometimes fatal consequences that include heart attacks, strokes, seizures, and kidney failure.

Since its inception, the LFA and its affiliated chapters have provided $21 million to fund more than 400 grants to research scientists at nearly 100 leading academic and medical institutions throughout the nation. LFA seed grants have led to tens of millions of dollars from other institutions, including the federal government, to allow these researchers to continue their work. In addition to direct support made possible through donations from individuals, corporations, foundations, and a nationwide network of LFA chapters and support groups, the LFA advocates to greatly expand funds for lupus research through grants from state and federal governments, and through private investment from biotechnology and pharmaceutical companies.

Dr. Betty Diamond Selected to Receive Prestigious Evelyn V. Hess Award - 10/16/2008 09:08 AM

Betty Diamond, M.D., Head of the Autoimmune Disease Center at The Feinstein Institute for Medical Research, North Shore LIJ -- Health Systems, and Professor of Medicine at the Albert Einstein College of Medicine, is the 2008 recipient of the prestigious Evelyn V. Hess Research Award, given annually by the Lupus Foundation of America, Inc. (LFA). The recipient is selected through a peer review process, and recognizes a lifetime of achievement in lupus research.

Dr. Diamond has dedicated her professional career to patients with lupus as a researcher, educator, and physician. As a researcher, Dr. Diamond’s studies in the areas of lupus in women, the role of autoantibodies in lupus, and the cognitive effects of lupus have helped define how researchers and physicians understand the disease. Her research efforts have been recognized by the American College of Rheumatology (ACR), the Arthritis Foundation, and the National Association of M.D./Ph.D. programs. In 2006, she was elected to the Institute of Medicine, and also serves on the Scientific Council of the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) and the Board of Directors of the American College of Rheumatology.

Throughout her career Dr. Diamond has continued to treat and care for patients with lupus and other autoimmune diseases. She is also committed to helping economically underserved communities and patients without access to health care. While she served as Chief of Rheumatology at the Albert Einstein College of Medicine she aggressively developed clinical care programs for the economically disadvantaged. In her current role as Head of the Autoimmune Center at The Feinstein Institute, Dr. Diamond opened rheumatology clinics in four underserved areas in the Bronx, Manhattan, Queens, and Nassau.

As an educator Dr. Diamond has mentored a long list of students, medical residents, and trainees in immunology and rheumatology. Previously, she served on the faculty of Columbia University, and for 15 years at the Albert Einstein College of Medicine she headed the M.D./Ph.D. program funded by the National Institutes of Health.

The LFA established this award in 2005 to honor Evelyn V. Hess, M.D., M.A.C.P., M.A.C.R., for her outstanding contributions to lupus research over the course of her long and distinguished career.

Dr. Diamond will receive her award on October 25th in San Francisco during a reception in her honor hosted by the LFA National Board of Directors.

Only a Handful of Walk for Lupus Now Walks Remain -- Find One Near You! - 10/15/2008 08:37 AM

Here are some communities with Walk for Lupus Now Walks taking place this weekend.

If there is no Walk in your community, you can still help the LFA by setting up your own fund-raising page and participate in your own walk. For example, you could walk your local mall, hiking path or community park.

Reproductive Health & Lupus Chat Transcript Posted Online - 10/10/2008 09:47 AM

Thanks to everyone who attended the "Reproductive Health & Lupus" webchat hosted by Dr. Bonnie Bermas on Wednesday. It went really well. A copy of that chat transcript has now been posted online.

And, we hope you will join us for the November 12, 2008 webchat. The topic is "Healthy Eating & Weight Management & Lupus," and it's hosted by Dr. Laura Coleman. Mark your calendars for that.

Join the LFA Webchat -- Reproductive Health & Lupus, hosted by Dr. Bonnie Bermas -- on Wednesday, October 8 - 10/03/2008 08:24 AM

The LFA welcomes Dr. Bonnie Bermas, who will serve as the guest expert for the Reproductive Health & Lupus chat.

Dr. Bonnie Bermas is an Associate Rheumatologist, Robert Breck Brigham Arthritis Center Assistant Professor of Medicine, Harvard Medical School. After attending Princeton University, Dr. Bonnie L. Bermas received her medical degree from Mount Sinai School of Medicine in New York where she was elected to the Alpha Omega Alpha honor society. Following the completion of her internship and residency in internal medicine at the Columbia Presbyterian Medical Center, she pursued fellowship training in rheumatology at the Brigham and Women’s Hospital in Boston and the National Institutes of Health (NIH) in Bethesda, Maryland.

Since 1993, Dr. Bermas has been an attending rheumatologist at the Robert Breck Brigham Arthritis Center. She has a special interest in the treatment of rheumatic diseased during pregnancy, the Antiphospholipid Antibody Syndrome, and Systemic Lupus Erythematosus. She has educational material on these subjects and is recognized as a regional expert in these areas.

In 2005, Dr. Bermas was named the clinical director of Systemic Lupus Erythematosus and Antiphospholipid Syndrome Center. Recently, she was awarded a clinical innovation grant from the Brigham and Women’s Hospital to improve the delivery of care and educational endeavors for patients treated in the SLE center.

You can submit a question in advance here.

We hope you can join us Wednesday afternoon. To do so, you can log in to the live chat here.

As always, copies of all chat transcripts are posted online within a day or 2 of the chat. Visit here to read the LFA's previous chat transcripts.

Beginning with the Spring 2009 issue, Lupus Now magazine is going to debut a new feature called "Fatigue Busters."

As such, we want to print your answers to this question:

"What suggestions do you have to beat fatigue?"

Email your response to LupusNow@lupus.org. Make sure your answer is 30 words or less. Please include your first name and last name in the email, and write "Fatigue Busters" in the subject line of your email.

We'll print your responses in each issue.

Lupus Blog Spotlight: Keep Working, Girlfriend -- Women, Work, and Chronic Illness - 09/24/2008 11:29 AM

I would like to share a chronic illness blog with you. It is called Keep Working, Girlfriend: Women, Work, and Chronic Illness. It's co-written by 2 women -- Rosalind Joffe and Joan Friedlander -- both of whom live with a chronic illness.

Here's a little bit about Rosalind and Joan ... in their own words.

"First, we each live with chronic illness. That means we know the daily questions, the self doubt, the pain, the fatigue, and the fear.

We’ve learned how tough it can be to get out of bed each day and get a job done, whether you work for yourself or someone else, whether you make just enough to get by or your salary is fat, whether it takes a one hour commute or you never have to leave home.

We’ve experienced how difficult it can be to keep working, especially if you’re a woman living with a chronic illness.

Let’s face it. The work world is a tough place for women who are “healthy,” and it can feel impossible when you’re managing an illness, too."

If you have some time, swing by Keep Working, Girlfriend: Women, Work, and Chronic Illness and say hi to Rosalind and Joan.

LFA "Healthy Aging & Lupus" Chat Transcript Posted Online - 09/19/2008 08:22 AM

First, thanks to everyone who attended the "Healthy Aging & Lupus" webchat hosted by Dr. Ronenn Roubenoff on Wednesday. It went very well. A copy of that chat transcript has now been posted online.

And, we hope you will join us for the October 8, 2008 webchat. The topic is "Reproductive Health & Lupus," and it's hosted by Dr. Bonnie Bermas. Mark your calendars for that.

Join the LFA Healthy Aging & Lupus Webchat on Wed., September 17 at 2 p.m. ET - 09/11/2008 07:17 AM

The LFA welcomes Dr. Ronenn Roubenoff, who will be our guest expert for the "healthy aging & lupus" webchat on Wed., Sept. 17 at 2 p.m. Eastern.

Dr. Roubenoff received his M.D. from Northwestern University in 1983. He is currently Adjunct Professor of Nutrition and Associate Professor of Medicine at Tufts and Tufts-New England Medical Center. In September 2002, Dr. Roubenoff became Senior Director of Molecular Medicine at Millennium Pharmaceuticals, Inc., in Cambridge, MA, where he directed research on biomarkers and personalized medicine. In January 2007 he became Sr. Director, Translational Medicine, at Biogen Idec, Inc.

Take the LFA's Survey So We Can Better Meet Your Needs - 09/04/2008 03:48 PM

The Lupus Foundation of America (LFA) is working to improve the way in which we serve people with lupus. We would appreciate 20 minutes of your time so that we can learn the issues most important to you and receive your views on how well LFA is meeting your needs.

Lupus Foundation of America Launches Center for Clinical Trials Education - 08/22/2008 12:07 PM

The Lupus Foundation of America (LFA) has announced the launch of the Center for Clinical Trials Education (CCTE), a resource for people interested in learning about and joining lupus clinical trials.

The initial programs of the CCTE include a Website (www.lupus.org/clinicaltrials) and a series of grassroots community education programs on clinical research offered through the LFA’s network of 38 chapters around the country.

The CCTE Website (www.lupus.org/clinicaltrials) has extensive information about clinical trials and clinical trial participation. It includes information on the rights and responsibilities of study volunteers and a list of important questions for someone with lupus to consider before joining a study. A trial-locating service on the Website has links to existing lupus clinical trials. Visitors can find details about individual studies, whether they are seeking volunteers, and the medical centers where the trial is being conducted. Future enhancements to the Website include a registry where individuals with lupus can volunteer to participate in current or future trials underway in their area.

“The growing number of lupus clinical trials and the rising level of interest among people with lupus about clinical research led us to the decision to create this new center,” said Sandra C. Raymond, the LFA’s president and chief executive officer. “We have already seen an increase in demand for people with lupus to serve as study volunteers. At the same time, people with lupus have voiced frustration in finding trusted information to make informed decisions about joining a trial. The CCTE will help meet those needs.”

Increased efforts to develop better treatments have created new challenges that the LFA is working to address. According to Ms. Raymond, currently there are approximately 51 lupus clinical trials and 37 compounds being tested as lupus treatments. She estimates that as many as 22,500 people with lupus will be needed as volunteers for research studies in the next year. The CCTE will make it easier for people with lupus to identify trials underway in their area.

The LFA is partnering with the Center for Information and Study on Clinical Research Participation (CISCRP), an independent and internationally recognized not-for-profit organization dedicated to clinical research education. Through this relationship the CCTE Website is providing information about clinical trials in English and Spanish tailored to people with lupus.

“Whether to participate in a clinical trial at a given time is a very personal decision,” noted Joan T. Merrill, M.D., medical director of the LFA. “Sometimes it makes sense to participate if current treatments aren’t working, if there are side effects of the treatments a person is taking, or just because it’s clear that without clinical trials, there won’t be progress in treating lupus. But not everyone is a candidate for a clinical trial. People need to talk to their doctor but also do their homework to learn as much as they can about what’s involved before they volunteer for a clinical trial. The Lupus Foundation of America’s CCTE provides a way for them to get that information, from a source they trust.”

Maintenance is Scheduled for the Message Boards This Wed., August 20 - 08/18/2008 04:19 PM

Please be advised that our vendor will perform scheduled maintenance in our hosting environment during the time period noted below:

The message boards and/or its services will be generally available as the vendor performs maintenance. It is expected that downtime will be 3 minutes or less.

Check out the Lupus Foundation of America's List of Approved Publications - 08/13/2008 07:50 AM

The Lupus Foundation of America Patient Education Committee has reviewed and approved a number publications and other materials for use in educating individuals and families about lupus and its health effects.

Items with code # are available for purchase online through the LFA store or by calling toll-free 1-866-4-THE-LFA (866-484-3532). LFA chapters also offer approved books for sale.

The LFA's "Seal of Approval" List (PDF - 16 pages)

* Documents denoted with (PDF) require Adobe Acrobat software.

T Cell Activation May Not Be Required in Lupus - 08/11/2008 08:52 AM

Researchers at Yale University recently discovered a way that B cells can be activated in the absence of T cells. Many researchers had believed that T cell activation of B cells was required to produce auto-antibodies, or antibodies that target “self,” causing autoimmune diseases, like lupus.

While the concept of B cells being activated without help from T cells is not totally new, this study may give some insight into why therapies that target T cells have not worked in past studies on lupus.

Read the Yale University release.

Feedback on the LFA Message Boards - 08/05/2008 02:17 PM

Hey everyone ...

Wanted to jump in and say I've seen some of the feedback you've had for the boards. I appreciate all feedback - whether positive or negative - as we're working to continually improve the resources we offer to you. Let me address the three main items that have come up.

Private Message (PMs): The feature has been turned off. The purpose of the message boards is to share information with all participants. We want to keep the boards open and accessible to everyone.

On the flip side, one thing we are looking into is opening up a room within our chat room that would be accessible to everyone on the message boards. This room would be available 24 / 7. I'll keep you posted on that front.

Using colors and fonts. Agreed. It would be nice to see some color in the boards. We've adjusted some of the settings within all the categories, and fingers crossed, you should be able to use color.

Adding pics to posts. For now, this is not something we plan to make available on the message boards. For several reasons.

New Category -- Disability, Insurance and Social Security Issues -- Introduced to Message Boards - 07/29/2008 09:04 AM

Another new category has been added. The new category is Disability, Insurance and Social Security Issues.

There have been lots of questions / comments about insurance, or applying for Social Security disability, so it made sense to group all of this information in one location. You can use this space to share advice, and what has / hasn't worked for you.

More improvements to the message boards will be coming, so be on the lookout for them.

Lupus Genetic Studies Seeks Volunteers - 07/25/2008 08:08 AM

The Lupus Genetic Studies at the Oklahoma Medical Research Foundation (OMRF) continue to look for families of all ethnic backgrounds, in which one or more individuals has been diagnosed with systemic lupus.

Qualifying participants help by completing some study paperwork and donating a one time blood sample. Travel to Oklahoma City is not necessary and there is no cost to participate.

Additionally, OMRF is looking for individuals with no lupus or lupus in their families to participate for comparison studies.

To learn more, visit the OMRF website for more information.

Lupus Foundation of America's UV Light & Lupus Chat Transcript Posted Online - 07/21/2008 10:37 AM

First, thanks to everyone who attended the UV Light & Lupus Webchat hosted by Dr. Victoria Werth last Thursday. It went very well. A copy of that chat transcript has now been posted online.

Second, today is the deadline for completing our reader survey for Lupus Now magazine. If you haven't already done so, please share your feedback with us. Take the survey here.

The LFA Thanks You for Supporting H.R. 6331, the Medicare Improvements for Patients and Providers Act - 07/17/2008 07:46 AM

The Lupus Foundation of America would like to thank you for all of your phone calls and letters to the President and Congress. President Bush vetoed H.R. 6331, the Medicare Improvements for Patients and Providers Act before noon on Tuesday, July 15th. However, thanks to all of your efforts, the House of Representatives and Senate voted later Tuesday afternoon to override the President’s veto. The House voted 383-41 and the Senate later voted 70-26. H.R. 6331 now becomes law!

This bill is important to people with lupus because it clarifies offlabel drug usage, protects special classes of prescription drugs, and provides coverage of the benzodiazepines and barbiturates which are currently excluded under Medicare Part D, along with other beneficiary protections.

Thank you again for all of your time and support for people who depend on the Medicare beneficiary protections guaranteed by this legislation!

Lupus Blog Spotlight: The Lupus Runner - 07/16/2008 09:28 AM

I would like to share a lupus blog with you. It is called The Lupus Runner. It's written by a runner named Brian Thomas.

Brian knows a lot of people with lupus. His mother-in-law has lupus. He and his wife have colleagues with lupus. He's even had students and known fellow runners with lupus. So Brian decided to help. In September 2007, he ran the North Country Trail 50-mile ultra-marathon in Manistee, Michigan. Accepting donations on behalf of the Lupus Foundation of America, Brian raised $5,000.

This year, he is running the Haliburton 100 mile run to raise money for -- about public awareness about -- lupus. Brian will also join forces with other people who have been affected by lupus, and who want to make a difference. If you are in Michigan, and would like to help Brian or join him in the marathon, contact him at fundraising@thomaswallace.org.

Here's a little bit about Brian ... in his own words.

"I'm an instructor at Saginaw Valley State University located in University Center, Michigan. I teach Global Cultures and Statistics. My research involves food, agriculture, and inequality. I have a Ph.D. in Sociology from Michigan State University and a M.S. in Environmental Studies from the University of Oregon. I'm married to my wonderful wife, Holli, and frequently run with our energetic one-year-old son Elliott, and our border collie Casey."

If you have a few moments, swing by The Lupus Runner and say hi to Brian.

Action Alert: White House Says President Will Veto H.R. 6331 - 07/11/2008 03:01 PM

Representatives from the White House have said that President Bush will veto H.R. 6331, the Medicare Improvements for Patients and Providers Act. The next step is now to contact your Representatives and Senators to vote to override the President's veto of H.R. 6331. Learn more and take action today.

Why this bill is important to people with lupus:

Clarifies off-label drug usage
The only drugs that currently have an indication for lupus are corticosteroids including prednisone, prednisolone, methylprednisolone, hydrocortisone; hydroxychloroquine (Plaquenil®); and aspirin. All other medications prescribed for lupus are considered off-label. It is important that people with lupus continue to have access to medications that are not currently approved for lupus.

Protects special classes of prescription drugs
If enacted, the law would require health plans to cover under Medicare Part D most classes of drugs for chronic diseases like lupus.

Provides coverage of the benzodiazepines and barbiturates
These drugs are currently excluded under Part D. Coverage is important because some physicians may prescribe these drugs for people with lupus who also may have seizures.

We encourage you to take action today.

Seeking Volunteers -- Who Meet Specific Criteria -- For A Clinical Study - 07/08/2008 02:11 PM

The LFA is working with a company who is conducting research to learn more from people who live with lupus. The goal is to learn how people with lupus cope with their medications, and the side effects of these medications. The conversations will last an hour by phone, and volunteers will be compensated for their time.

In particular they are looking to speak with people who:

Take the Lupus Now Magazine's Reader Survey - 07/02/2008 08:12 AM

It’s reader survey time again! We want to know what you like about Lupus Now, what you would change, what’s most important to you, and the topics you’d like to see covered in future issues.

The survey will be posted online through July 21. Take the survey here http://www.lupus.org/magazinesurvey.

You’ll be able to read all about the results in the Fall issue, due out in early October.

Make a Gift to the Lupus Foundation of America -- and Have it Double -- Today! - 06/26/2008 02:24 PM

The Cooper Family Foundation has pledged $200,000 to the Lupus Foundation of America (LFA). Additionally, they have challenged us to match their pledge with new contributions from supporters of the LFA.

Any gift that you contribute between now and August 15, 2008 will be matched by the Cooper Family Foundation.

Your contribution will advance desperately needed research. Last year, the LFA could afford to fund only one in four requests from scientists working to bring us closer to new treatments and the answers patients and families still await.

Think of how much more impact your gift will have when it is matched dollar-for-dollar by the Cooper Family Challenge. Your investment will have double the impact on our life-saving work, and will go twice as far in our fight against this life-threatening, life diminishing disease.

With your gift today -- doubled by the $200,000 Cooper Family Challenge -- we can continue to fund promising research which yields new treatments, new hope, and ultimately, a cure!

Thank you for giving generously now, when your gift will go twice as far!

Updates to the LFA Message Boards - 06/25/2008 01:59 PM

As you might have noticed, we’ve made a few updates to the LFA message boards. Here are some of the changes we’ve made.

The "Pregnancy & Lupus" category has been renamed Women’s Issues to make it more inclusive.

The "LFA Webchats, Lupus Now magazine" category has been removed.

Two new categories have been added. First is the Welcome / Introductions category. In this area, you can introduce yourself to the board. Share what part of the country – or the world – you’re in. Or if you’re looking to connect with someone in your specific part of the world, this is the place to do so.

The second new category is Lupus In The News. Have you heard lupus discussed in the news? Or has it been mentioned on TV or the radio? You can discuss what you’ve heard here.

We have a few more changes coming down the pike so be on the lookout for them.

Something New Under The Sun - 06/23/2008 01:37 PM

Last summer, the Food and Drug Administration (FDA) proposed new standards for the creation, testing, and labeling of over-the-counter sunscreen products containing ultraviolet A (UVA) protection. UVA rays stay at the same intensity throughout the day and the year, as opposed to ultraviolet B (UVB) rays, which are significantly stronger in summer. Previously, most of the FDA’s focus on sunscreen products involved reducing exposure to UVB light.

The new rule would include a four-star rating system on the product label -- from a low of one star to the high of four stars -- so that consumers can easily find the level of UVA protection provided by each product. The number of stars would be based on two tests: one to determine the product’s ability to reduce the UVA light passing through it, and the other to determine the product’s ability to prevent tanning. The meaning of “SPF” will change as well, from “sun protection factor” to “sunburn protection factor.”

If the rule is adopted, the maximum SPF value will increase from 30 to 50+, the highest value the FDA can verify using current testing methods. Also included would be a new “sun alert” statement and instructions emphasizing the importance of reapplying sunscreen.

The FDA is still reviewing the submitted data and is expected to issue a final rule for over-the-counter sunscreens in the near future.

Coming Soon to Your Mailbox: Lupus Now Summer 2008 (and if you’re not a subscriber, here’s what you’ll be missing!) - 06/16/2008 10:45 AM

It seemed only natural for our Summer magazine to have its cover story on how and why UV rays from the sun can be bad for people with lupus. But did you know that UV rays from fluorescent light can affect you, too? We’ll talk about how you can protect yourself from getting a rash or worse -- triggering a flare. (Hint: you can even be fashionable while you’re being safe!) In this story we also include the latest on the law to switch from incandescent bulbs to fluorescent bulbs, as well as the FDA’s proposed new standards for over-the-counter sunscreen products.

Lupus is called the ‘prototypical’ disease for a good reason -- lots of reasons, in fact: symptoms come and go, mimic other illnesses, change over time, affect just about any part of the body, are different for different people. But what’s it like to have one or two or even three other illnesses besides lupus? For one thing, how do you know which symptoms belong to which condition? And which doctor is treating which condition? Read the stories of three people living with more than their share and gain a new perspective on overlapping symptoms and individual solutions.

Our series of articles on clinical trials comes to a close with this third installment. Find out how researchers feel about the challenges and importance of enrolling participants of different ethnicities, and the different ways investigators reach out to diverse community groups and help overcome cultural barriers. All three articles will be linked with the LFA’s soon-to-launch Website for clinical trials education.

It’s reader survey time again! We want to know what you like about Lupus Now, what you would change, what’s most important to you, and the topics you’d like to see covered in future issues. The survey will be posted online but only though July 21, so look for it here, at lupus.org/magazinesurvey. You’ll be able to read all about the results in the Fall issue, due out in early October.

You know those Internet warnings and water cooler chatter about all the things that can trigger or affect lupus? We put on our investigator hats and looked into the most enduring of these in order to help you separate the facts from the fiction. Five of the best known are featured in Lupus Living in this issue, and we’ll keep putting them in upcoming issues of LN as we hear about them. Your favorites, or any you wonder about, are welcome; send them to lupusnow@lupus.org with “Triggers” in the Subject line.

And speaking of popular topics, who hasn’t experienced the dreaded weight gain from taking prednisone? In Wellness, we discuss how to deal with the physical and emotional effects of that unpleasant side effect. We also offer answers to eight of the most common questions people have when they are first diagnosed with lupus. In the Fall magazine we’ll look at eight more.

Summertime means ... camp time! A variety of camps exist for families dealing with chronic illness, like Lupus Week at Camp Sunshine, and Camp Discovery for children with skin disease. Find out how your gang can take part. And teens, don’t miss this interesting roundtable discussion as three young ladies talk about staying active with lupus, while at the same time taking extra care in the sun.

So, there’s your sneak peek at what’s in store in the Summer issue of Lupus Now. We hope you’ll enjoy it.

Don’t forget, the survey is online now, and we need to hear from you. We get our best ideas from our dedicated readers, so you never know -- your suggestion could appear in one of next year’s magazines!

UCB Reports Initial Clinical Data Provide Encouraging Results - 06/12/2008 01:32 PM

PARIS, FRANCE – UCB announced that data presented today show that epratuzumab treatment demonstrated clinically meaningful improvements in moderate and severe flaring systemic lupus erythematosus (SLE) patients. The data were from the first placebo–controlled studies using epratuzumab in SLE patients and were presented at the annual European Congress of Rheumatology (EULAR).

The clinical studies presented at EULAR showed that flaring SLE patients treated with epratuzumab experienced reduced disease activity and were less reliant on the use of steroids to control the disease than those receiving placebo. The incidence of adverse events was similar for the epratuzumab and placebo groups.

“These initial clinical results for epratuzumab are very encouraging,” commented lead study author Dr Michelle Petri, Director, Lupus Center and Professor of Medicine, Johns Hopkins University School of Medicine, Baltimore, MD, USA. “Developing new compounds for SLE patients is critical because currently available treatments, such as immunosuppressants and corticosteroids, often have serious and debilitating side-effects. We look forward to seeing results from other clinical trials involving epratuzumab.”

Epratuzumab is a fully-humanised anti-CD22 compound with the potential to modulate B-cell activity. Although the exact function of CD22 is not fully understood, it is known to be involved in B-cell development, function and survival. B-cells are known to contribute to SLE by producing antibodies against the body’s own tissues, causing the body’s immune system to turn on itself, attacking cells and tissue and resulting in inflammation and tissue damage. SLE is a chronic and potentially fatal autoimmune disease with a variable and unpredictable course. It can affect any part of the body, but most often harms the heart, joints, skin, lungs, blood vessels, liver, kidneys and nervous system and is characterised by periods of flares, or exacerbations, interspersed with periods of improvement or remission.

In the clinical studies, 90 patients were randomised to receive epratuzumab 360 or 720 mg/m2 infusions at weeks 0, 1, 2 and 3, with subsequent treatment cycles of two infusions one week apart, every 12 weeks, for up to four treatment cycles over a 48-week period. The efficacy endpoints included a reduction in disease activity, as measured by the BILAG* Activity Index, steroid sparing and improvements in both physician and patient global disease activity assessments. Both doses of epratuzumab resulted in clinically meaningful reductions in total BILAG scores versus placebo from week 4 through to week 48 and reduced steroid use. Also, according to physician and patient global assessment scores, more epratuzumab patients showed improvement compared with the placebo group, with a high degree of correlation between the patient and physician global assessments. Additionally, epratuzumab was shown to be well-tolerated in these studies, with a similar safety profile as placebo. The incidence of serious adverse events, adverse events in particular reflecting infections and infusion-related reactions, were similar across active and placebo treatments.

UCB has initiated a new Phase IIb clincal study programme for epratuzumab, which consists of two studies. The primary objective of the phase IIb programme is to assess the dose response and the dose frequency for epratuzumab. Further information on the study can be found at Clinicaltrials.gov.

Transcript from Men's Health & Lupus Chat Posted Online - 06/11/2008 02:29 PM

Thank you to everyone who attended yesterday's chat, featuring guest expert Dr. Jennifer Grossman, who answered questions regarding "Men's Health & Lupus." The chat went well.

The transcript from that chat has now been posted online. You can read it here.

80 International Lupus Experts Met to Address Gaps in Clinical Research to Speed Approval of New Treatments - 06/09/2008 10:40 AM

Research scientists and physicians – including scientific thought leaders from university centers, pharmaceutical and biotechnology industries, the National Institutes of Health, U.S. Food and Drug Administration, and other government agencies – addressed two important gaps impeding approval of new treatments for the autoimmune disease lupus during the Lupus Foundation of America’s (LFA) 2nd International Flare Conference June 5 and 6 in suburban Washington, DC. These experts discussed modifications to tools used to monitor disease progression and how lupus patients respond to treatment. They also worked to develop a consensus definition of a lupus flare, which is an increase in disease activity.

It has been difficult to define a lupus flare because the disease manifests itself in diverse ways in different people, affects multiple organ systems, and can increase and decrease in severity from one day to another. Accurately and consistently measuring a flare is crucial to monitoring progression of the disease in patients and to evaluating the effectiveness of treatment over time.

“This effort is part of the LFA’s strategy aimed at bringing down barriers that have obstructed progress on research and to advance the science of lupus,” said Sandra Raymond, LFA President & CEO. “The fact that no new drug therapies have been approved for lupus in more than four decades underscores the need to address issues and answer questions that have impeded the successful outcome of clinical trials of new, safe and effective therapies for the disease.”

Without new approved drugs specifically for lupus, physicians must rely on therapies borrowed from other diseases. Many are highly toxic, causing side effects that can be worse than the primary disease. The LFA is working to bridge gaps in lupus research to stimulate additional public and private investment in the development and approval of new lupus treatments.

Annie & Tom's "Race to the Altar" Ends; Their Impact Goes On - 06/04/2008 04:02 PM

We are sorry to report that Annie and Tom did not make it through to the final round in the NBC TODAY Show’s “Race to the Altar.” Their quest to be married on the plaza outside the TODAY studios ended on June 4.

However, the impact of their efforts lives on in the increased awareness of lupus that Annie’s story provided.

The Lupus Foundation of America is very proud of Annie for sharing her story about lupus with millions of viewers. She served as an inspiration to people with lupus around the world, who were following and supporting her "race to the altar."

We thank Annie and Tom for their willingness to serve as spokespeople for this important cause and we wish them the best as they journey through life together.

On behalf of the entire lupus community, we extend our gratitude and blessings. You made all of us very proud!

Annie & Tom Advance in the TODAY Show "Race to the Altar." Place Your Votes Today! - 05/29/2008 10:57 AM

Annie and Tom of Chicago, Illinois are one step closer to winning the NBC TODAY Show's annual "Race to the Altar." The competition is now down to three couples who seek to be married in June on the plaza outside the TODAY Show studio in New York. Your vote today can help Annie and Tom get married live on national television.

The Lupus Foundation of America is supporting Annie and Tom's efforts to be selected as this year's winning couple. Annie has had to live with not only the physical challenges of lupus but also cope with the emotional toll that lupus can take on individuals and families affected by this serious and life-changing disease.

The deadline for voting in the next round is Noon Eastern time on Monday, June 2. Your votes for Annie and Tom are critically important as the competition heats up!

Rally your friends, family members, co-workers, neighbors -- anyone you can -- to join you in this national effort to bring lupus to the forefront and help Annie and Tom have a wedding that they, and the entire lupus community, will never forget.

Vote now for Annie and Tom through the TODAY website
http://today.msnbc.msn.com/id/24596237/

You also can vote for Annie and Tom AGAIN (and AGAIN) by texting the number "3" to 46833.

Read their profile page:
http://today.msnbc.msn.com/id/24485029/

Visit Annie and Tom's webpage:
http://www.annietom.com/

Meet all of the couples competing in the 2008 "Race to the Altar":
http://today.msnbc.msn.com/id/24583045/

The Lupus Foundation of America thanks you for helping Annie and Tom win the 2008 "Race to the Altar."

Help Create a National Lupus Awareness Campaign - 05/28/2008 11:24 AM

You may already have heard that the Advertising Council -- the organization which created such pop culture icons as McGruff the Crime Dog, the Crash Test Dummies, and Smokey the Bear -- has been contracted by the U.S. Department of Health and Human Services-Office on Women's Health to develop a public awareness campaign about lupus.

This is your opportunity to play an important role by helping to create this campaign which will debut later this year.

The lupus awareness campaign will include messages for radio and television stations, newspapers, magazines, transit, outdoor and the Internet. When launched later this year, the campaign will increase public understanding of lupus, its symptoms and consequences.

Lupus Foundation of America public opinion polls reveal that only one in five Americans knows about lupus. And even those who say they know something about the disease often do not fully understand its impact on individuals and families. Here's how you can help increase awareness of this terrible disease and generate more public support for lupus research and support services.

Volunteers needed!

The staff of Muse Communications, the award-winning advertising agency that will produce the campaign, is looking for volunteers -- people with lupus -- to keep a journal for two weeks, describing what it is like to live every day with lupus. Volunteers will record in their journals all of the challenges they face in living and coping with the disease.

Muse staff will review all of the journals and -- here's the best part -- several will be selected for use in the campaign. If your journal is selected, you could appear in the campaign as a spokesperson for lupus awareness to help put a face on the disease.

Here's what to do to obtain your journal!

Fill out this online form. Within a couple of days, you will receive your journal. Write in it every day, recording your activities and emotions. Then send it back, along with your picture, to the address provided.

While only a few journals will be featured in the campaign, every journal submitted helps the people of Muse develop effective advertising messages that will educate the public about lupus.

We really need your participation. Everyone with lupus -- more than 1.5 million Americans -- will benefit from the additional support and resources this campaign will generate for lupus. Please request your journal right now.

Medication Management & Lupus -- the Wed., May 28 Webchat at the Lupus Foundation of America - 05/27/2008 11:17 AM

Join the LFA's Webchat this Wednesday afternoon, May 28, at 3 p.m. Eastern Time.

Dr. Joan T. Merrill, the Medical Director of the Lupus Foundation of America, will serve as the guest expert for the Medication Management & Lupus chat.

Joan T. Merrill, M.D., is currently Head of the Clinical Pharmacology Research Program at Oklahoma Medical Research Foundation (OMRF), OMRF Professor of Medicine at the University of Oklahoma Health Sciences Center and Assistant Professor of Medicine at Columbia University in New York City. She received her medical training at Cornell University Medical College, New York, NY, followed by an internship and residency at St. Luke’s/Roosevelt Hospital Center, a fellowship in rheumatology at NYU Medical Center and a basic research fellowship in the Department of Pediatrics at Columbia University.

Dr. Merrill’s research focus is the study of genetics and pathophysiology relevant to atherosclerosis risk in lupus and antiphospholipid syndrome, for which she has received multiple foundation and NIH grants. She has numerous publications in journals such as the Journal of Immunology, the Journal of Clinical Rheumatology, and the New England Journal of Medicine. She is a sought-after speaker at clinical symposia both nationally and internationally.

Dr. Merrill is a member of the Lupus Foundation of America’s Medical Scientific Advisory Council. She is the co-chair of the American College of Rheumatology’s Study Group and member of the Food and Drug Administration’s Arthritis Drugs Advisory Committee, in addition to many other active professional appointments.

Learn more about the Webchat here.

Lupus Community Rallies Behind Annie & Tom on TODAY Show "Race for the Altar" - 05/21/2008 01:16 PM

Annie and Tom of Chicago, Illinois made it through the first elimination round this week and will continue to the next round of competition on the NBC TODAY Show’s annual "Race to the Altar." Your vote today can help Annie and Tom get married live on the show in June.

The couple also was the winner of this week’s wedding challenge. They raised more than $323 for charity in 15 minutes by selling cupcakes to the crowd on the plaza outside the TODAY studios. As this week’s winning couple, they were able to select the wedding cake.

Annie was diagnosed with lupus when she was 17. After she was diagnosed, Annie feared that no one would ever be able to love her completely for who she was as a person. Yet it was her chronic disease that gave Annie an inner strength and drive to succeed, all qualities that to this day Tom constantly admires about her.

The Lupus Foundation of America is supporting their efforts to be selected as this year’s winning couple. Annie’s fears are shared by many of the 1.5 million Americans with lupus who often have to battle not only the physical burdens of the disease but also the emotional toll that a chronic and unpredictable disease like lupus can extract.

The deadline for voting in the next round is Noon on Monday, May 26. Urge your family and friends to join you in this national effort to bring lupus to the forefront and help Annie and Tom have a wedding they and the entire lupus community will never forget.

Vote for Annie and Tom:
http://today.msnbc.msn.com/id/24596237/
You also can vote AGAIN by texting to 46833 and voting for couple number 4, Annie & Tom.

Read their profile page:
http://today.msnbc.msn.com/id/24485029/

Visit Annie and Tom’s webpage:
http://www.annietom.com/

View all of the couples competing in the TODAY Show "Race to the Altar:"
http://today.msnbc.msn.com/id/21134540/vp/24501223#24501223

The Lupus Foundation of America thanks you for helping Annie and Tom try to win the 2008 "Race to the Altar."

Fiancée with Lupus in TODAY Show Wedding Contest - 05/16/2008 02:50 PM

Annie and Tom from Chicago, Illinois are one of five couples competing in the NBC TODAY Show's annual "Race to the Altar." Your vote today can help Annie and Tom get married live on the show in June.

Annie was diagnosed with lupus when she was 17. After she was diagnosed, Annie feared that no one would ever be able to love her completely for who she was as a person. Yet it was her chronic disease that gave Annie an inner strength and drive to succeed, all qualities that to this day Tom constantly admires about her.

Help Annie and Tom be selected as this year’s TODAY Show wedding couple by voting for Annie and Tom. The deadline for this round of voting is 12 p.m. Eastern Time this coming Monday, May 19.

Vote for Annie and Tom:
http://today.msnbc.msn.com/id/24596237/

Read their profile page:
http://today.msnbc.msn.com/id/24485029/

Visit Annie and Tom’s webpage:
http://www.annietom.com/

View all of the couples competing in the TODAY Show "Race to the Altar:"
http://today.msnbc.msn.com/id/21134540/vp/24501223#24501223

The Lupus Foundation of America thanks you for helping Annie and Tom try to win the 2008 "Race to the Altar."

MSNBC debuts a new series called "Medical Mysteries"; Lupus is featured first. - 05/13/2008 08:35 AM

Robert Bazell, NBC News Chief science correspondent, debuted a new series on Monday, May 12, called "Medical Mysteries," the focus of which is autoimmune diseases. Lupus was the first autoimmune disease to be featured.

Read Robert Bazell’s piece here. In this piece, the Lupus Foundation of America's Website, lupus.org, was recognized as "an excellent source of information."

Watch MSNBC’s 2 minute video clip, featuring Jennifer Pearce, a person living with lupus.

What’s the best advice you can give a person with lupus who’s applying for SSDI benefits? - 05/07/2008 08:51 AM

When you have an unpredictable disease like lupus, it can be comforting to know that vast stores of medical information and people who really get what you’re going through are just a couple of mouse clicks away on the Web.

In the "Opining Online" column in the Fall 2008 issue of Lupus Now, we want to print your answers to this question:

"What's the best advice you can give a person with lupus who’s applying for SSDI benefits?"

Email your response to LupusNow@lupus.org. Make sure your answer is 30 words or less. Please include your first name and last name in the email, and write "Advice for SSDI Benefits" in the subject line of your email. We'll print as many of the responses as we can.

US Congress Passes the Genetic Information Nondiscrimination Act (GINA) - 05/06/2008 01:48 PM

The Genetic Information Nondiscrimination Act, HR 493, passed the Senate by a vote of 95-0 on April 24th and passed the House on May 1, 2008 by a vote of 414-1. The bill introduced by Representative Louise M. Slaughter, would prevent discrimination based on genetic information. Representative Slaughter said she has been trying to get similar legislation passed for six terms of Congress.

The bill would prohibit employers from using genetic screening results in hiring, assignment or promotion decisions. Health insurers would not be able to use the information to deny coverage or set higher premiums for patients with increased genetic predisposition to a disease.

Studies have shown that people fear that their DNA results might be used against them and therefore some people forgo genetic tests that could tell them whether they are susceptible to certain diseases. HR 493 is a positive step to help ease these fears and allow people to get the tests that they need.

HR 493 has been sent to President Bush and he is expected to sign the bill into law.

May is Lupus Awareness Month - 05/01/2008 07:29 AM

Every day, 1.5 million Americans (enough people to fill thirty baseball stadiums) struggle with the often disabling and life-altering impact of lupus. Lupus is the result of an unbalanced immune system that can become destructive to any major organ or tissue in the body. Lupus is unpredictable and potentially fatal, yet no satisfactory treatment or cure exists.
Why is awareness of lupus important? To save lives! Consider these facts:

UPDATE: Status of LFA Message Boards Functionality - 04/25/2008 10:48 AM

I have heard back from the vendor who hosts the message boards. It turns out they have been upgrading the hosted Coldfusion environment. This is why the boards were moving slower, and why some users experienced error messages.

The update has just been completed. All previous site issues should now be resolved. If you continue to run into challenges, feel free to contact me at webmaster@lupus.org.

Thank you for your patience.

Reports of the Message Boards Moving Slowly Etc. - 04/25/2008 07:36 AM

Several message board users have reported that the site has been moving somewhat slowly over the last few days. And reports of error messages when moving from one thread / category to another thread / category are popping up as well.

This has been reported to the vendor who hosts the message boards. As soon as we have some answers, the LFA Moderator will share them with everyone.

Thank you for your patience during this time.

New Message Board Category -- Pregnancy & Lupus -- Added to This Site - 04/18/2008 08:24 AM

As you may / may not have noticed ... the LFA has added a new category to its message boards -- Pregnancy & Lupus.

Based on threads throughtout the existing boards, we thought it made sense to create a new category for this topic. As such, all known existing threads for pregnancy and lupus have been moved into this new category.

You can view the pregnancy & lupus category here.

We will continue to monitor the boards and look for trends / themes that may warrant their own category.

Thank you for helping make these boards so successful. We couldn't do it without you.

Lupus Foundation of America Partners with CaringBridge - 04/16/2008 07:53 AM

The LFA wants to help you stay in touch with family members and friends. Now, in partnership with CaringBridge, you can stay connected with your personal and private journal, guestbook and photo album -- all in one place -- using CaringBridge’s personalized website design.

Founded in 1997, CaringBridge is a free, non-profit Internet service that now connects more than 15 million people each year. The service is always free, private and personalized, and it takes just a few moments to set up your own CaringBridge website. Like the LFA, CaringBridge is a national voluntary health agency and a member of the National Health Council. Its mission is to bring together a global community of care powered by the love of family and friends in an easy, accessible, and private way.

It’s easy to set up your own website -- simply visit http://www.caringbridge.org/lupus and follow the simple steps.

Keeping in touch with loved ones during difficult times is important. Together we are stronger.

ABC News Now Interviews with Mercedes Yvette / Dr. Gary Gilkeson Now Available - 04/14/2008 08:52 AM

Lupus Foundation of America (LFA) national spokesperson, Mercedes Yvette, and chair of the LFA Medical-Scientific Advisory Council, Dr. Gary Gilkeson, appeared on the ABC News Now program, Healthy Living, on April 7 to discuss lupus. Mercedes discussed how lupus has affected her life and her role as a spokesperson for the LFA. Dr. Gilkeson provided the program’s more than 35 million viewers an overview of lupus, its impact, plus an update on new developments in research and treatment.

Mercedes won the hearts of millions of Americans through her struggles with lupus, which were chronicled in 2004 on the hit UPN Television Network show, “America’s Next Top Model,” hosted by supermodel Tyra Banks. Despite the constant pain and fatigue of living with lupus, Mercedes went on to become runner-up in the model competition. She later became a national spokesperson for the LFA while building a successful modeling career.

Dr. Gilkeson is a Professor of Medicine/Microbiology and Immunology at the Medical University of South Carolina in Charleston. He is also the Vice Chairman of the Department of Medicine for Research. Dr. Gilkeson's research and clinical interests are both in lupus, particularly lupus nephritis. His clinical focus in lupus nephritis is the factors resulting in the ethnic disparity in outcomes in lupus comparing African Americans to Caucasians.

View the segment about treating and diagnosing lupus featuring Dr. Gilkeson and Mercedes.

View the segment about living with lupus featuring Mercedes.

A Friendly Reminder about the LFA Message Boards - 03/27/2008 08:51 AM

Good morning everyone …

I wanted to take a moment to remind everyone why they come to the LFA’s message boards.

The main purpose of the boards is to provide support, along with guidance and advice, on how to best live with lupus. I’ve seen a lot of very helpful advice and support offered among the almost 600 registered users of this board.

As you would expect with that many users, everyone has an opinion and is entitled to that opinion. That’s what makes for a healthy and lively discussion. But when a discussion gets derailed and becomes more personal, it enters an area that I do not want -- nor will I tolerate -- on our boards.

My role is to ensure that everyone who visits the LFA’s message boards has a positive experience. And I will need your help to do that.

I think we can safely say it’s ok to “agree to disagree.” And then we move forward with helping each other.

Thank you for helping our boards grow so quickly within a short period of time. It wouldn’t be successful without you.

best,
the LFA Moderator

New LFA PSA from A Second "Scrubs" Cast Member - 03/20/2008 11:20 AM
This is one of the latest LFA public service announcements (PSAs).

Like the Sarah Chalke PSA, it too is brand-new and features Donald Faison, who plays Dr. Christopher Turk on TV's "Scrubs."

This new PSA is called Let's Get Educated: The Lupus Foundation of America. Take a look.

Check out the Latest LFA PSA featuring TV's "Scrubs" - 03/14/2008 10:31 AM

This is one of the latest LFA public service announcements (PSAs). It is brand-new and features Sarah Chalke, who plays Dr. Elliott Reid on TV's "Scrubs." You may be wondering what her connection to lupus is. Randall Winston, a producer for "Scrubs," has a sister with lupus.

This new PSA is called Lupus: A Challenging Ailment. Take a look.

Join us Wed., March 12 at 3 p.m. Eastern for the Kidneys & Lupus Webchat - 03/11/2008 08:56 AM
The Lupus Foundation of America is pleased to welcome Dr. James Tumlin, who will discuss kidneys & lupus.

Dr. Tumlin is the Director of the Southeast Renal Research Institute in Charlotte, NC and Associate Professor Medicine at University of North Carolina, Charlotte. After earning his medical degree at the University of South Florida, Dr. Tumlin completed his training in internal medicine and nephrology at Emory University in Atlanta. He then joined the faculty achieving the rank of Associate Professor Medicine before relocating his research efforts to Charlotte North Carolina. He is currently the director of the Southeast Renal Research Institute (SERRI); an organization focusing upon clinical and translational research in renal disease.

Learn more about the Webchat.

Check out the archive of previous chat transcripts.

We hope you can join us.

Do you have questions? Then check out the Frequently Asked Questions area of lupus.org. - 03/05/2008 10:11 AM
The Lupus Foundation of America Website contains a wealth of infomation about all aspects of lupus.

For your convenience, the LFA has provided an index of the most frequently asked questions posed to our health education department.

Frequently Asked Questions

Are You Having Problems with Insurance or Access to Health Care? - 02/29/2008 11:09 AM
While monitoring the message boards, we have noticed that some folks are having problems with both insurance and access to health care.

We suggest that you contact the Patient Advocate Foundation. Their website is located here http://www.patientadvocate.org/.

Check them out to see if they can be of assistance.

Lupus-related questions? Send them to the LFA Health Educator. - 02/27/2008 03:28 PM
The Lupus Foundation of America wants to make you aware of a resource: The LFA Health Educator.

She can be reached at 202-349-1159 or at LupusInfo@lupus.org.

New Forum Category Added: Caregivers of People Living with Lupus - 02/19/2008 12:10 PM
Thanks to everyone for all the feedback so far. We are listening!

As such ... we have added a new forum category called "Caregivers of People Living with Lupus."

We hope you will find this helpful. Any other recommendation, comments or thoughts can be emailed to webmaster@lupus.org.

Enjoy the message boards!

The LFA Moderator.

ATTENTION: WYSIWYG editor issues and Windows VISTA! - 02/13/2008 02:11 PM
For those of you trying to use the message boards via Windows VISTA, there is an issue with the WYSIWYG editor. The vendor is aware of it, and will be providing us with a patch to correct this in the next few weeks.

In the meantime, you can avoid this by making a simple adjustment -- Revert to the HTML Editor under your PROFILE/PERSONAL OPTIONS settings for the time being.

Thank you for your patience.

The Lupus Foundation of America