A Potential New Treatment for Severe Discoid Lupus

Discoid lupus is a form of lupus that affects the skin (cutaneous lupus). In most cases the discoid lupus rash appears on the face, neck, or scalp, though it can also show up on other areas of the skin. Severe discoid lupus may result in scarring. The treatments that are used most often for severe discoid lupus are strong immunosuppressants that may have significant side effects, especially when used over long periods of time. Efalizumab (trade name, Raptiva™) works by interfering with the function of overactive immune cells that are causing disease activity. The researchers in this study wanted to see if Raptiva could be effective in treating discoid lupus.

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Check Out the Andrew Sacks Photography Exhibit & Reception This Sunday, May 31 ... to Benefit the LFA, Philadelphia Tri-State Chapter

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!

Photo credit: Andrew Sacks collection

Check Out the Walk for Lupus Now Event This Coming Weekend in Connecticut

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.

• West Hartford, Connecticut -- May 31, 2009

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.

Every 30 minutes ...

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

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.

Is There A Biomarker for Lupus in Children?

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

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

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

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 16-17.

• Hot Springs, Arkansas -- May 16, 2009
• Vernon Hills, Illinois -- May 16, 2009
• Oklahoma City, Oklahoma -- May 16, 2009
• Piscataway, New Jersey -- May 17, 2009
• Montpelier, Vermont -- May 17, 2009

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.

H1N1 (Swine) Flu Advisory for People with Lupus

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?

It is estimated that more than five million people worldwide have a form 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!

Learn how you can raise awareness during Lupus Awareness Month, and on World Lupus Day.

Learn what other countries are doing to observe World Lupus Day, which is Sunday, May 10.

LFA's "Neurology / CNS & Lupus" Webchat to be Held Wednesday, May 13 at 3 p.m. Eastern

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

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.

• San Diego, California -- May 9, 2009
• Battle Creek, Michigan -- May 9, 2009
• Columbus, Ohio -- May 9, 2009

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

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.

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:

• Send an ecard
• Post a flier
• Wear a wristband
• Write a letter to your local news editor

To learn more detail about how to implement these suggestions, and many others, visit http://www.lupus.org/lupusmonth.