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2013 National Lupus Advocacy Summit

 

June 24-26, 2013

At the 2013 National Lupus Advocacy Summit, lupus adovcates from across the nation took to Capitol Hill to make their voices heard and urge Congress to support expanding the medical research effort on lupus and access to treatments. Thousands more called, emailed, or sent letters to their members of Congress. Lupus advocates also presented more than 30,000 petitions from individuals around the country calling upon Congress to expand the medical research effort on lupus.

“We urge everyone to contact their Representatives and join us in the call for increased funding for lupus research and increased access to medications,” said Sandra C. Raymond, President and CEO of the Lupus Foundation of America. “We must work together to elevate lupus on the nation’s health care agenda and ensure that lupus receives the attention and resources it deserves.”

“Since I was diagnosed with lupus, I have had a colon resection, gall bladder removal, a stroke, and total hysterectomy. This is just the physical impact of lupus, there is also a tremendous financial and emotional burden on my family and all families affected by lupus that often goes unseen,” said lupus advocate Erin Kotecki Vest from Los Angeles, CA. “I want Congress and the public to understand how serious and debilitating this disease is, and the urgent need for more research and better treatments, so other families don’t have to go through what mine has experienced.”

Distinguished Leadership Award

On June 25, a special luncheon was held to honor Congressman David McKinley (R-WV-1) and present him with the Foundation's Distinguished Leadership Award. Congressman McKinley was recognized for his sponsorship of the Patients’ Access to Treatment Act, which would limit cost sharing for medications on specialty drug tiers, expanding patients' access to treatments and containing their health care costs.

Help Us Solve the Cruel Mystery™ National Tour

The Help Us Solve the Cruel Mystery™ National Tour was a national education and awareness program launched by the Lupus Foundation of America to address this urgent national public health issue. The first-of-its-kind program included a tour bus with interactive exhibits to help people learn about lupus through the experiences of those who live with lupus. It also included an education program for people with lupus and their families, and a state-of-the-science continuing medical education program for healthcare professionals. 

As part of the Summit, the 45-foot purple bus was on Capitol Hill for members of Congress, their staff, and the public to tour. The bus made several stops throughout the District between June 24-26.

View the 2013 National Lupus Advocacy Summit program.