We know more about lupus than we did 10 years ago.  Advances in lupus research have provided us with a better understanding of the possible underlying causes of the disease, and unprecedented opportunities to greatly expand our knowledge base on lupus. Only through a comprehensive, targeted medical research effort will we be able to find a cure for this complex disease. Accelerating medical research on lupus and engaging all relative public and private sources of support in this effort are among the LFA’s highest priorities. 

In 2010, the LFA accomplished goals in these areas:

• Developed the LFA Professional Online Instrument Training Program™ (LFA POINT program), a Web-based service through which physicians and clinical investigators receive uniform training on instruments used to assess disease activity in clinical studies and medical practice.
• Established the Lucy Vodden Research Grant Award with musician and philanthropist Julian Lennon. The research initiative is named after Lucy Vodden, a childhood friend of Lennon’s who lost her battle with lupus in September of 2009 at the age of 46.
• Achieved an 18 percent increase in visits to the LFA Center for Clinical Trials Education (LFA CCTE), the comprehensive trusted resource for all people with lupus considering participation in a clinical research study.
• Launched the Lupus Research Registry through the LFA Center for Clinical Trials Education (LFA CCTE), which uses information provided by the registrants to help connect them to local clinical studies enrolling volunteers.
• Awarded nearly $24 million since the program’s inception to more than 400 investigators at 100 institutions throughout the United States. The LFA is directing its support toward areas of research where gaps exist in the understanding of lupus and toward promising areas of study where other public and private organizations have not focused their efforts. In 2010, the LFA provided grants in the following areas: pediatric lupus, reproductive health, lupus nephritis, neuropsychiatric lupus, stem cells, and male lupus. Visit the LFA's National Research Program  for a complete list of 2010 award recipients.
• Hosted a meeting in cooperation with the National Institutes of Health (NIH) of nearly 200 lupus researchers, clinicians, and representatives from government, industry, academia, and nonprofit organizations to look at ways to best apply research findings from lupus mouse models to human lupus.

Public awareness and advocacy go hand in hand. Through increased awareness, we can elevate lupus on the nation’s health care agenda and bring national attention and resources to lupus. The LFA is aggressively conducting outreach efforts to increase public understanding of lupus through national awareness campaigns, media outreach, and online and social marketing. We are the leading voice for people with lupus advocating for expanded investment in research and education on Capitol Hill and in state capitols across the country.

In 2010, the LFA accomplished goals in these areas:

• Continued support of The Advertising Council’s multi-media lupus awareness campaign, which generated nearly $60 million in donated media since the launch of the campaign in 2009.  The LFA is the Founding Partner on the campaign sponsored by the U.S. Department of Health and Human Services Office on Women’s Health (OWH).
• Collaborated with musician and philanthropist Julian Lennon and musician James Scott Cook to promote the song “Lucy,” which resulted in significant media coverage including: USA Today, Billboard Magazine, Washington Post, WebMD magazine, and the CBS Early Show.
• Expanded the LFA’s social media presence and created new online tools to educate and engage constituents and to recruit new LFA supporters.  This expansion included a new interactive Facebook Fan page and new videos featured on the LFA’s Web site, www.lupus.org, and YouTube page.
• Attracted more than 40,000 individuals in 67 cities to participate in the LFA’s signature national walk program, Walk for Lupus Now®.
• Increased traffic to the LFA’s Web site by 13 percent, generating more than 3 million visits worldwide.
• More than 24,000 people signed a pledge committing to raise awareness during Lupus  Awareness Month in May. Eduardo Xol from ABC’s Extreme Makeover: Home Edition kicked off the campaign with a personal message encouraging people to Band Together for Lupus™ and raise awareness their own way in their communities.

In 2010, the LFA accomplished goals in these areas:

• Secured $4.5 million for the National Lupus Patient Registry operated through the Centers for Disease Control and Prevention (CDC) for Fiscal Year 2010.  This study will firmly determine the number of people with lupus in the United States. To date, Congressional support for the study is $18.4 million.
• Stimulated $1 million to continue the national lupus education campaign in conjunction with the U.S. Department of Health and Human Services Office of Minority Health (OMH), the Office on Women’s Health (OWH), and the Office of the Surgeon General.
• Gathered more than 2,000 advocates to share their personal stories during the LFA's Twelfth Annual Advocacy Day about the many ways lupus has affected their lives. Two hundred advocates personally met with Members of Congress on Capitol Hill and another 1,800 emailed or called to urge support for more funding for lupus research, awareness, and health care provider education.
• Conducted meetings with key officials at the National Institutes of Health (NIH), Centers for Disease and Control and Prevention (CDC), U.S. Food and Drug Administration (FDA), and Members of Congress to educate policy makers on the needs of people with lupus. This included: the urgent need to expand the medical research effort on lupus, affordable health care for all, and increased public understanding and awareness of lupus.
• Led MAPRx, a coalition of more than 48 patient, family, caregiver and health professional organizations committed to safeguarding the well-being of people with chronic disease and ensuring prescription access under Medicare Part-D and the private insurance sector.
• More than $11.8 million has been awarded since 2005 to support important lupus research studies through the U.S. Department of Defense (DoD) Congressionally Directed Peer Reviewed Medical Research Program (PRMRP). Through its advocacy efforts, the LFA made a persuasive case to DoD officials that described the relevance of lupus research to military personnel and their dependents.
• Expanded the LFA’s state and local advocacy efforts by introducing lupus awareness and education legislation and hosting state advocacy days. To date, 37 states have pursued Lupus Awareness Month initiatives for May, 10 states have held advocacy days, and eight states have introduced LEAP bills (Lupus Awareness and Education Programs).

As the authoritative voice for people with lupus, the LFA collaborates with international lupus experts to translate the latest research findings into medically sound and innovative educational materials, programs, and tools for people with lupus and health care providers. Our goal is to ensure that all people affected by lupus have access to the information and services they need.

In 2010, the LFA accomplished goals in these areas:

• Distributed 135,000 copies of the LFA’s award-winning magazine Lupus Now® to individuals with lupus and their families, policy makers, and health professionals. Lupus Now contains the latest information on clinical research, lifestyle, and coping strategies.
• Created new educational materials and expanded content on the LFA’s Web site in Spanish and Chinese.
• Launched the pilot program Lupus: Learn from the Experts™, a series of telephone conferences and online presentations hosted by leading lupus experts that cover topics of interest to people at different points in living and coping with their lupus including, diagnosis, treatments, and the emotional and physical aspects of the disease.
• Generated a 20 percent increase in inquiries through the LFA’s National Health Educator Network, responding to nearly 55,000 inquiries in English, Spanish, and Mandarin.
• Provided education, support, and referrals to approximately 200,000 individuals through outreach and education efforts, including sponsoring more than 200 support groups, and conducting more than 400 patient education programs.
• Launched "15 Questions With...," a new online “ask the experts” forum for people living with lupus and their caregivers which covers topics including: kidneys and lupus, men and lupus, skin lupus, and disability. The transcripts have been viewed more than 40,000 times.