Welcome to a Government Affairs E-News Alert from the
Sjögren’s Syndrome Foundation!
May 7, 2004
First Edition of 2004
If you are one of the many joining the SSF Government Affairs E-Newsletter for the first time—Welcome! We are glad you filled out our government interest form and want to join a growing number who are committed to making a difference in the everyday struggle of living with Sjögren’s syndrome. At any time, if you do not wish to remain on this list, please reply to this e-mail simply saying “Unsubscribe SSF Government List”.
NEWS ALERT!
Our Congressional Resolution urging funding for the
National Institutes of Health (NIH)
Autoimmune Diseases Research Plan has just been introduced!
Contact your Representative and request support for House Resolution 610, introduced by Rep. Stephen Lynch (D-MA) and co-sponsored by Rep. Todd Tiahrt (R-KS).
Why is the Resolution so important to Sjögren’s syndrome patients?
The Sjögren’s Syndrome Foundation has played a key role in putting the plan together, ensuring Sjögren’s is highlighted.
The federal initiative is the first-ever comprehensive integrated research plan for the family of 80-100 autoimmune diseases, which together affect 14-22 million Americans. Sjögren’s syndrome is a prime example of an autoimmune disease that often overlaps with related autoimmune disorders and occurs in families with more than one autoimmune disease.
The research plan includes investigation into the burden, cause, diagnosis, treatment and prevention, and education, awareness, and information dissemination.
The Resolution marks a major step in increasing support on Capitol Hill to obtain funding for the research plan, and ultimately, for Sjögren’s syndrome.
We need you!
Contact your Representative and request support for House Resolution 610 sponsored by Representative Lynch and Representative Tiahrt. You can find your Congressional members through the SSF website at the following address: http://www.sjogrens.org/advocacy/representative.html
Use e-mail or fax. Always include your name, full home address, and phone number in correspondence. For e-mails, align the information on the left-hand side at the end of your message; some congressional offices use a filter system for e-mails and only read messages from obvious constituents. If you prefer snail mail, your letter should go to your member’s local office and not to Washington, D.C.
Let the Foundation know when you receive a response from your legislator and about any actions your legislator has promised to take.
***THANK YOU!***
IN OTHER NEWS:,
1. The Prevention, Awareness, and Research Autoimmune Disease Act:
Another federal initiative important to everyone with autoimmune disease is stalled in committee and needs support to move forward.
H.R. 3359 is sponsored by Representatives Patrick Kennedy (D-RI) and Fred Upton (R-MI) and would provide funds to increase awareness of autoimmune disease and incentives to expand research. While the bill is designed to cover all autoimmune diseases, examples focus on several specific autoimmune disorders, including lupus, multiple sclerosis, and rheumatoid arthritis, and also on fibromyalgia.
2. A Congressional Briefing on Autoimmune Disease:
The SSF and National Coalition of Autoimmune Patient Groups showcased the NIH research plan, the Resolution, and the Kennedy-Upton bill at its March 24, 2004 Congressional Briefing on Autoimmune Disease. A Sjögren’s syndrome patient spoke about her struggles living with the disease. See your May 2004 issue of The Moisture Seekers for details.
3. FY2004-05 Appropriations report language on NIH research plan:
If you live in any of the following congressional members’ districts, please let them know you appreciate their submission of appropriations report language, citing the importance of funding the NIH Autoimmune Diseases Research Plan. Senate language was submitted by Senators Thad Cochran (R-MS) and Tom Harkin (D-IO), and Representatives Steny Hoyer (D-MD) and Todd Tiahrt (R-KS) took the lead in submitting language for the House of Representatives.
The Sjögren’s Syndrome Foundation is working closely on legislative issues with the National Coalition of Autoimmune Patient Groups so many more voices can join together to make greater progress and improve the lives of all autoimmune patients. SSF’s Kathy Hammitt leads the coalition as its coordinator. For more information on Sjögren’s and autoimmune legislative initiatives, contact SSF’s Director of Research Development and Public Policy at khammitt@sjogrens.org.
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