Historic Event on Capitol Hill for Sjögren’s Syndrome and Autoimmune Disease

The Sjögren’s Syndrome Foundation took a lead role with the National Coalition of Autoimmune Patient Groups to hold a Congressional Briefing on March 14, 2003. We joined related non-profits and legislators in celebrating the 2003 release of the National Institutes of Health Autoimmune Diseases Research Plan, raising awareness of the need for research and the existence of a plan written and vetted by experts, and requesting federal funding.

A highlight of the event came with actress Kellie Martin’s presentation of her family’s poignant story of dealing with autoimmune disease. SSF’s Medical and Scientific Advisory Board Chair-Elect, Dr. Frederick Vivino, spoke from the clinicians’ viewpoint and cited patients’ struggles and the need for better treatment options. SSF’s Kathy Hammitt spoke on behalf of the coalition, praising the energy in the Senate hearing room and the large numbers of congressional staff and representation from many autoimmune disease groups.

SSF was also well-represented by Dr. Gary Foulks of the University of Pittsburgh Medical Center, Dr. Michael Lemp, professor emeritus of Georgetown and George Washington Universities, and Bobette Morgan, officer of the SSF Board of Directors. SSF Pennsylvania residents met with the office of Senator Arlen Specter following the Briefing. Specter became a co-sponsor of the event along with Senator Tom Harkin at the behest of SSF. Other sponsors included Senators Joseph Biden, Richard Shelby, and Edward Kennedy, and Representatives Henry Waxman, Stephen Lynch, and Michael Bilirakis.

The ground-breaking NIH plan presents a strategy for federally-funded research into autoimmune diseases as an interrelated group. Many of us with Sjögren’s syndrome have first-hand experience with how autoimmune diseases can run in families and how people can suffer from multiple autoimmune disorders and symptoms.

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