2009: A Year of Many Firsts in Efforts to Overcome Lupus

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

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.

Lupus Foundation of America Launches “Official” Fanpage in Facebook

Great news … the LFA has launched its official Facebook fanpage. Become a fan today!

What You Get by Becoming a Fan

Access to lots of great information, plus the opportunity to directly connect with others who are also living with this disease.

What You’ll Find in the LFA Fanpage

Interact with others living with lupus by posting to the LFA wall. Have a question? Post it. Got an answer to someone else’s question? Then post it. Plus, you can keep up-to-date on the latest lupus information by signing up to receive LFA’s enewsletters.

Check out all of the LFA’s campaigns, including the new LUCY awareness campaign. In the LUCY & Lennon section, you’ll find extra goodies not available on lupus.org, like the LUCY photo album.

Keep abreast of the LFA’s events, whether it’s Advocacy Day on Capitol Hill in March, or the spring 2010 season of Walk for Lupus Now. Watch the latest research videos. And there’s much more!

Don’t wait a minute longer! Share with your family, friends, and coworkers.

Become a fan of the Lupus Foundation of America today.

See what others are already saying …

Thanks LFA for all the work you all do!! Much appreciated by a fellow Lupie.
Cindy

For those of us with lupus, you are a ray of hope and information. Thank you.
Lois

I have always been a fan of the Lupus Foundation of America.
Jo Anne

Give Your Skin Relief from the Winter Weather

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.

Guest Blogger Amanda Davenport Dishes on LUCY and Lennon

Hey everyone, it’s me again … Amanda. I wanted to share with all of you a great experience I recently had.

This past Tuesday, December 15th, I had the privilege of going to the CBS Early Show with a few of the Lupus Foundation of America (LFA) ladies -- my new friends Maggie and Sara -- to meet Julian Lennon and James Scott Cook. We were there to show support for their new single "LUCY" which will help raise awareness and money for lupus.

What a great time we had! It was so nice to finally meet Maggie and Sara, and they are absolutely awesome. We are so fortunate to have them working with us to give lupus the proper attention it deserves. I know I am thankful.

Despite the very cold temperature, it was nice to feel the warmth of a crowd gathered together for a common cause. The fact that we got to meet Julian Lennon and James Scott Cook made it a day I will never forget.

If you do not know the backstory of the song "LUCY," I encourage you to visit lupus.org/Lucy. Here's a little hint. Julian Lennon's "LUCY" is the same "LUCY" from a certain Beatles' song written by his father, John. The fact that James Scott Cook's grandmother also has lupus -- and is also named Lucy -- made the song that much more poignant.

Meeting Julian and finding out just how truly nice a guy he is, coupled with the fact that he is very passionate about helping those of us affected by lupus, inspired me and those I was with to try to do even more.

Thanks to all of you who keep up the fight, and to Maggie and Sara for coming to NYC for this amazing event. And a very special thank you to Julian Lennon and James Scott Cook for creating such a lovely song that carries a message of hope for all of us.

I am very proud to say that I was there that day.

If you'd like to see more pictures from that day, please become a fan of the LFA in Facebook.

I wish everyone happy holidays! Keep Fighting!

Amanda

photos courtesy of Amanda Davenport
Top right photo: Julian Lennon poses with Amanda Davenport
Bottom right photo: James Scott Cook signs Amanda's Walk for Lupus Now t-shirt

The Story behind LUCY

As you have no doubt heard, musicians James Scott Cook and Julian Lennon have partnered to release the song, LUCY. A portion of the proceeds will be donated to the Lupus Foundation of America and the Saint Thomas' Lupus Trust in Great Britain to support lupus research.

In this video, Julian explains the associations between his childhood friend, one of his father's most famous songs, and the autoimmune disease lupus. Then he and James perform an acoustic version of the song, LUCY.

Download LUCY from iTunes and Support Finding a Cure for Lupus

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.

LFA Advocates Successfully Increase Lupus CDC Funding

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:

• $4,505,000 for the National Lupus Patient Registry (NLPR) at the Centers for Disease Control and Prevention (CDC). This is an increase of $505,000 over FY09 Appropriations.
  
• $1 million to continue the national lupus health education program for physicians and healthcare providers within the Office of Minority Health.

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!

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.

Registration opens January 2010.

Until then, learn more about the LFA's advocacy efforts.

Holidays = Headaches

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.

taken from the Fall 2007 issue of Lupus Now magazine

Watch the LFA's Latest Video Series on Lupus Research

At the American College of Rheumatology's (ACR) 2009 Annual Scientific Meeting in Philadelphia, 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.

Topics covered include: Treatments for Lupus, Complications of Lupus, and Causes of and Progression of Lupus.

Watch videos of the latest lupus research.

Give Gifts of Hope This Holiday Season

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).

You can also pre-order Julian Lennon's new EP, featuring LUCY, which will be available December 15.

Choose one of many ways to give a Gift of Hope to people living with lupus.

LFA's "Medication" Webchat to be Held Wednesday, December 9 at 3 p.m. Eastern

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.

Lupus Foundation of America, Greater Washington Chapter Celebrates 35th Anniversary on December 5

LFAGW Luncheon with Silent Auction to Help Fund New Patient Navigator Program

The Lupus Foundation of America, Greater Washington Chapter (LFAGW) will celebrate 35 years of success providing free day-to-day education, advice and resources for the 75,000+ people with lupus and their families in the greater D.C. area.

LFAGW’s 35th Anniversary Luncheon will be held on Sat., December 5 from 12:00 p.m. – 2:30 p.m. at B. Smith’s, 50 Massachusetts Ave., N.E., Washington. For tickets, table sponsorships and additional corporate opportunities, please call Kassandra Kearse at 202-349-1167.

To help fund LFAGW’s new Patient Navigator Program, accompanying silent and online auctions will feature outstanding items including a two-week San Miguel deAllende vacation, hand-painted silk scarves, a home wine-tasting party, antique Christmas ornaments and more.

"Since 1974, our grassroots efforts have created a lifeline for many lupus patients in our area, and our members continue to grow,” said Penny Fletcher, LFAGW president and CEO. “We look forward to ongoing success with our inspirational patients, partners and friends whose steady support enables us to carry out our mission,” she said.

LFAGW’s pioneer Patient Navigator Program will offer patients a greater ability to navigate the health care system, one-on-one focused help and education. Although there is still no cure for lupus, there are ways to enhance health care access, delivery and provide a safety net for lupus patients.

LFAGW’s ongoing, free services serve the Washington, Baltimore, extended Virginia and West Virginia areas, including: support for newly diagnosed patients, free support groups/counseling, ongoing education and seminars, “Living with Lupus” workshops, an annual symposium, fundraising walks, disability workshops, a regular newsletter and more.

Learn more about the LFAGW chapter here.