What is Advocacy?
Find Your Representative
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!
2013 Legislative Agenda
Congress Can Help - Provide the National Insititutes of Health (NIH) with $30.95 billion by supporting the 6% funding increase proposed in the Senate's FY 2014 Labor-HHS-Education Appropriations bill. While NIH supports a scleroderma research portfolio, recent years of near level funding and sequestration are significantly reducing research resources. The FY 2014 funding increase recommended by the Senate would recover the funds lost through sequestration and facilitate expansion of the scleroderma research portfolio at NIH. Take action now >>
Include "scleroderma" once again on the list of conditions deemed eligible for study through the Department of Defense (DoD) Peer-Reviewed Medical Research Program (PRMRP). Scleroderma has been part of DoD medical research activities through the PRMRP for years, and, as a result, many meritorious grants have been funded in this area. In order to ensure ongoing progress, please work to include scleroderma as an eligible condition when the House and Senate craft a final FY 2014 Defense Appropriations measure. Take action >>
Co-sponsor the bipartisan Scleroderma Research and Awareness Act (H.R. 1429/S. 1239). This important legislation seeks to improve health outcomes for scleroderma patients by directing NIH to expand research activities and enabling an innovative public awareness program through the Centers for Disease Control and Prevention.Take action now >>
- 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