Welcome to the First Government Affairs E-mail Message for the Sjögren's Syndrome Foundation!
March 2002 Edition:
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.
SSF to Hold First-Ever Capitol Hill Day
Sjögren's Syndrome Foundation members who signed up for the first Capitol Hill Day are ready to hit the halls of Congress! A full day's program and legislative visits are scheduled for April 10, 2003.
IF YOU ARE NOT PARTICIPATING IN CAPITOL HILL DAY, YOU CAN STILL HELP! Find your legislators' e-mail or local office addresses.
E-mail your congressional members on April 10, 2003 and let them know you support your fellow members' visits and requests.
- Ask your legislator to help fund the NIH Autoimmune Diseases Research Plan, so researchers can make progress in developing new treatments for Sjögren's syndrome and related autoimmune diseases and learning more about potential causes of these devastating disorders.
- Tell them about Sjögren's syndrome and how it affects your life.
- Watch your Moisture Seekers newsletter and the SSF website advocacy page for sample letters to congressional members.
- Our Congressional Letter that members will carry to legislators on Capitol Hill Day will be posted on the SSF website advocacy page by April 7, 2003. Ask your legislator to sign this letter.
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*** REMEMBER: ADVOCACY IS EDUCATION! ***
Legislators can help increase research in Sjögren's Syndrome only if and when they are educated about the issue. Become an educator for Sjögren's.
