What is Advocacy?
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| Tell your represenatives that scleroderma is important to you! |
Advocacy is the act of educating the public about an issue, supporting or defending a cause, and recommending an action.
During an election cycle, all eyes turn to national, state and local politics. The Scleroderma Foundation advocates on the behalf of the entire scleroderma community throughout the entire year, whether there is an election or not. Several times a year, scleroderma patients and family members visit their Congressional leaders in Washington, D.C. This important action has helped us cultivate new relationships with elected officials and strengthen existing relationships with others.
Over the next few months, we will continue to share your scleroderma stories throughout the halls of Congress. This is an exciting time and we hope you will be a part of it! Become a scleroderma advocate today!
What is the "Scleroderma Research and Awareness Act"?
With the commencement of the 113th Congress in January 2013, we are happy to report that the Scleroderma Research and Awareness Act has been reintroduced in the House of Representatives through the bipartisan efforts of Representative Lois Capps (D- CA) and Representative Peter King (R-NY). The new House Bill is HR 1429. We expect that Senator Kirsten Gillibrand will be reintroducing the Senate version of the bill soon. The legislation asks for an increase in funding for scleroderma research and awareness campaigns. The bill does not seek new money, but requests that a larger allocation of money from the National Institutes of Health be channeled into scleroderma research.
We encourage all of you to contact your elected officials and ask them to co-sponsor this legislation By clicking the “take action now” link below, you can e-mail your elected officials. If you need to find your representative or senator, search by zip code.
We are also happy to report that scleroderma has again been named as a disease eligible for the Department of Defense Peer Reviewed Research Program. Scleroderma researchers have obtained over $10 million in research funding through this program over the past several years. We look forward to researchers again securing some of the $50 million available for research during the next fiscal year.
Action to Take
Contact your elected leaders and tell them why scleroderma is an important issue to you. Here are some sample messages to send to your leaders:
Suggested message to Senators
During the 112th Congress we worked for passage of the Scleroderma Research and Awareness Act (S. 649). It is expected that this bill will be re-introduced this spring by Senator Kirsten Gillibrand. We ask your support in the coming months regarding this upcoming bill. Scleroderma is an autoimmune disease without any known cause or cure and can be life threatening. Additional awareness and research is needed to help all those suffering from this disease. I hope I can count on your support.
Suggested message for House Representatives
With the commencement of the 113th Congress in January 2013, we are happy to report that the Scleroderma Research and Awareness Act has been reintroduced in the House of Representatives through the bipartisan efforts of Representative Lois Capps (D- CA) and Representative Peter King (R-NY). The new House Bill is HR 1429. We expect that Senator Kirsten Gillibrand will be reintroducing the Senate version of the bill soon. The legislation asks for an increase in funding for scleroderma research and awareness campaigns. The bill does not seek new money, but requests that a larger allocation of money from the National Institutes of Health be channeled into scleroderma research. We ask your support in the coming months regarding this upcoming bill. Scleroderma is an autoimmune disease without any known cause or cure and can be life threatening. Additional awareness and research is needed to help all those suffering from this disease. I hope I can count on your support.
Helpful Links
- U.S. Senate Website
- U.S. House of Representatives Website
- National Governors Association Website
- Important News from Washington, D.C.
- Tips to Talk to Your Elected Officials
