Only Four Days Remain To Make Your Voice Heard and Spread Awareness of Lupus

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

Sign up for an Walk for Lupus Now event

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

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

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

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

(May 12, 2010-WASHINGTON, DC)- 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.

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

(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 both English 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.

Lennon and Cook Sing for Lupus

We all know “Lucy in the Sky with Diamonds” as the psychedelic 60’s anthem by The Beatles. But what you may not know is the song was inspired by a drawing made by John Lennon’s young son, Julian, of his classmate Lucy Vodden. Lucy passed away last year from complications of lupus. WebMD Magazine recently published a great article about Julian Lennon and his actions to raise awareness for lupus. We are posting the article today in honor of Julian Lennon and James Scott Cook’s performance tonight for LFA’s Butterfly Gala National Awards Dinner of their song, LUCY.

Julian Lennon Sings a New "Lucy" Song for Lupus

How Will You Observe World Lupus Day?

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 these 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!

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.

Honor your mom with a gift of hope.

You Did It!

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

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.