Lupus Foundation of America Recognizes National Advocates
Advocates generated millions in federal appropriations for lupus research, education and support services.
The Lupus Foundation of America presented its first Sandra C. Raymond Advocate of the Year Award last week during the nation’s largest-ever gathering of lupus advocates in Washington, DC. The award is named in honor of the Foundation’s immediate past President & CEO for advocacy achievements during her 17-year tenure at the helm of the Lupus Foundation of America.
The Foundation presented the award to Judy Barlin of Miami, Florida. Barlin is a member of the Foundation's National Board of Directors and chairs the Board's Advocacy and Government Relations Committee. Her son Michael lost his life to lupus at the age of 24. She, along with her husband Wayne, have dedicated countless hours advocating for families impacted by lupus and have given and raised millions to ensure the needs of children with lupus are recognized in research.
Recognizing that the two most significant sources of funding for lupus research are the federal government and the pharmaceutical industry, Raymond has always stressed the critical role advocacy plays in advancing research on lupus. She engaged lupus scientific opinion leaders, industry leaders and government experts to implement a nationwide advocacy campaign for lupus.
Through Raymond’s leadership, the Foundation worked to elevate lupus on the nation’s health agenda, generating millions of dollars in federal funding for lupus researchers to support their studies. Within the past five years alone, these efforts have produced more than a half-billion dollars in federal appropriations for research on lupus.
Working with the Foundation’s Board of Directors and staff, these legislative efforts have led to many significant accomplishments, including:
- Establishing the first Congressional Lupus Caucus in the U.S. House of Representatives to bring lawmakers together to advance important lupus priorities and raise awareness of lupus among their colleagues on Capitol Hill.
- Establishing the Federal Working Group on Lupus at the National Institutes of Health (NIH) to coordinate efforts among all federal agencies with an interest in lupus.
- Expanding the Department of Defense (DoD) Congressionally Directed Medical Research Program to fund studies on lupus, including stimulating the development of a new line-item program within the DoD to exclusively support lupus research.
- Establishing the National Lupus Patient Registries at the U.S. Centers for Disease Control and Prevention (CDC) to obtain a more reliable estimate of the incidence and prevalence of lupus among demographic groups most at risk for lupus.
- Launching the National Resource Center on Lupus, an online resource funded through the CDC to increase knowledge and enhance the skills of those with lupus and their health care providers.
- Presenting consensus recommendations to the U.S. Food and Drug Administration on how to improve the way lupus clinical trials are designed and conducted to speed approval of new safe, targeted and tolerable therapies for people with lupus.
- Securing millions of dollars in federal appropriations for the US Department of Health & Human Services Office on Women's Health and Office on Minority Health to produce the first nationwide Ad Council campaign on lupus, improve training for physicians who treat lupus patients, and increase minority participation in lupus clinical trials.
The Foundation’s National Board of Directors named the award in honor of Raymond and selected Barlin as its inaugural recipient to recognize both women’s outstanding achievements on behalf of the 1.5 million Americans living with lupus.
The award is to be presented annually during the Foundation’s advocacy summit which brings together hundreds of lupus advocates from across the country to share their stories with Congress and urge elected officials to support policies that increase funding for research and accelerate development of new treatments.
Judy and Wayne Barlin’s vision led the Foundation to launch a childhood lupus research program – funding research and supporting advocacy focused on childhood lupus. As a result of these efforts, Congress directed the CDC to fund nearly $1 million in childhood lupus research this year. She and her husband have been leaders in helping to advance lupus research and established the Michael Jon Barlin Pediatric Lupus Research Program in their son’s memory.