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!
2014 Legislative Agenda
ACTION ALERT! Relist Scleroderma as eligible condition - DoD PRMRP
THE ISSUE: From FY 2005 to FY 2014, scleroderma was recognized as one of a handful of conditions eligible for study through the Department of Defense Peer-Reviewed Medical Research Program (PRMRP). Scleroderma researchers were allowed to compete for research funding because Members of Congress placed scleroderma on the eligible conditions list each year, resulting in over $10 million of scleroderma research funding, not including three new research projects supported by the PRMRP in FY 2013.
Unfortunately, scleroderma was not placed on the eligible conditions list for FY 2014, which means researchers will not be able to submit grant applications for funding.
One factor in the lapse in research support was that new legislators began overseeing the eligible conditions list in FY 2014, and it's likely that they were not familiar with scleroderma. In order for scleroderma to be re-listed as a condition eligible for study through the PRMRP in FY 2015, we need to educate our legislators about scleroderma and ask them to include "scleroderma" on the eligible conditions list.
TAKE ACTION! The annual list of conditions eligible for research through the PRMRP appears in the Committee Report that accompanies the Senate Defense Appropriations Bill. This means that your two Senators are currently deciding which conditions belong on the eligible conditions list. To reach out to your Senators and ask them to place scleroderma on the list again in FY 2015, CLICK HERE>
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