LUPUS FOUNDATION OF AMERICA - Highlights of Key LFA Accomplishments

Highlights of Key LFA Accomplishments

Convened a panel of 70 lupus experts, 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 focused on how to better conduct studies of potential new lupus treatments, including clinical endpoints, diagnostic tools, background medications, and clinical trial design.
Convened the 2nd International Conference on Lupus Flares attended by more than 80 physicians from around the globe. More than 125 physicians worldwide and representatives of every pharmaceutical and biotechnology company developing new treatments for lupus, along with representatives of the federal government (including FDA and NIAMS) have participated in this initiative since it was launched in 2006.
Through local and national donor support, the LFA has provided nearly $20 million in direct research grants to 400 lupus investigators at nearly 100 medical and academic institutions in the United States.
As part of the Foundation’s national research program, Bringing Down the Barriers, the LFA has launched new lupus research initiatives in areas which have in the past received insufficient funding, including mid-to-late stage translational research; lupus in children, adolescents and men; adult stem cell transplantation; lupus-related cardiovascular disease; and novel pilot projects. Within the past two years, the LFA has awarded more than $3 million to support lupus research studies.
LFA launched the Michael Jon Barlin Pediatric Research Program, the only program of its kind dedicated to pediatric lupus research.
Launched the LFA Center for Clinical Trials Education, a comprehensive, trusted resource for all people with lupus considering participation in a clinical research study.
Stimulated the creation of the first-ever Federal Working Group on Lupus (FWGL) which is comprised of all federal agencies with an interest in lupus; the FWGL is led by Dr. Stephen I. Katz, Director of the National Institute of Arthritis and Musculoskeletal and Skin Diseases.
Successfully advocated to open additional federal funding sources for lupus research through the Department of Defense and the Centers for Disease Control and Prevention which thus far have provided $12 million in new funding for lupus research.
Recruited and actively worked with a nationwide grassroots network of more than 80,000 lupus advocates, donors and volunteers representing every state who have helped advance lupus public policy initiatives and stimulate millions of dollars in increased government funding for research.
Established a partnership with the U.S. Department of Health and Human Services Office on Women’s Health to co-sponsor a three-year, $3 million national lupus awareness campaign produced by the Advertising Council that launched in March 2009.
Secured changes to regulations governing eligibility for the Social Security disability program to enable more individuals with lupus to qualify for benefits.
Launched Lupus Now®, the only national magazine for individuals with lupus, their families and health professionals.
Launched a new patient education series covering all aspects of living and coping with lupus.
Created a new interactive Website, recognized during a session at the American College of Rheumatology Annual Scientific Meeting as the best source on the Internet for lupus information, which includes Webchats, Webcasts, message boards, blogs, enewsletter updates, and online communities.