What is Advocacy?
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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!
Relist Scleroderma as eligible condition - DoD PRMRP
We are proud to announce that the Foundation’s Advocacy Team achieved its number one goal in this legislative session by getting the United States Senate to include scleroderma as an approved condition that can receive research funds through the Department of Defense Peer Review Medical Research Program (PRMRP). This opens an additional $247.5 million in federal funding for scleroderma researchers to apply for. Scleroderma Foundation Advocates from across the country wrote letters, sent e-mails, called, and met with their Senators or key staff. The concentrated effort and the involvement of many Foundation members throughout the country made this achievement possible.
"This just shows that our approach to advocacy works,” said Foundation CEO
Robert Riggs. “Our primary objective in the Foundation’s advocacy work is to
ensure that scleroderma gets its fair share of research funds available through
Federal entities such as the National Institutes of Health and, in this case,
the Department of Defense.”
We congratulate and thank all of our active advocates who have continued to make the scleroderma community’s voice heard on Capitol Hill!
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 >>
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