Advocates on Steps of Congress 2013
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What is Advocacy?

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Tell your senators and representatives that scleroderma is important to you!

become an advocate buttonAdvocacy 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! 

2015 Legislative Agenda

The start of 2015 was also the start of a new Congress (114th) in Washington D.C., as well as the re-writing and re-introduction of the “Scleroderma Research and Awareness Act”. Of critical importance to the scleroderma community in 2015 is not only bringing our patients’ stories to the many new legislators (especially those in key congressional committees), but building on the momentum of our recent success in getting “scleroderma” relisted as an eligible condition for study through the Department of Defense (DOD) Peer-Reviewed Medical Research Program (PRMRP) in FY 15. Our plan is to reach out to Senators currently working on the FY 16 DOD to ensure that “scleroderma” remains listed.

 


ACTION ALERT!  PLEASE CONTACT YOUR SENATORS

Ask them to continue to support “scleroderma’s” inclusion as condition eligible for study through the Department of Defense Peer-Reviewed Medical Research Program during the FY 2016 appropriations process!

Each year, the United States Senate crafts an annual Department of Defense (DoD) appropriations bill, which includes a list of conditions that are deemed “eligible for study” through the Peer-Reviewed Medical Research Program (PRMRP). In order for a condition to be included, Senators need to support the condition and officially ask for its inclusion. Senators have many competing appropriations priorities and in order for them to support a condition-specific request, they need to be educated and asked to do so by constituents. 

Last year, grassroots scleroderma advocates engaged in a successful congressional outreach effort, which led to the recognition of “scleroderma” as a condition eligible for study through the DoD PRMRP in FY 2015. This action will allow scleroderma medical researchers to compete for nearly $250 million in federal funding during FY 2015

Senators are currently working on the FY 2016 DoD appropriations bill and deciding which conditions will be included on the next PRMRP eligible conditions list. Being included on the list one year is no guarantee of being included again in the next year! 

At this critical juncture, please reach out to the offices of your Senators and ask that they “once again support the inclusion of scleroderma in the DOD PRMRP’s eligible conditions list in FY 2016.”  

Click here to send a letter


 

Capitol Hill, April 27-29, 2015  - POSTPONED

We thank everyone who submitted a letter of interest to participate in the upcoming Scleroderma Advocacy Day on Capitol Hill in Washington, D.C. on April 28. In spite of our best efforts to get our bill introduced into this Congress, it has not happened yet and we realize it will not happen before Congress adjourns for recess; therefore, we are postponing Advocacy Day until a later date this year.If you have already sent in a letter of interest to participate in Advocacy Day, your application will be kept on file for consideration once the new date for Advocacy Day is finalized.

Please stay tuned for updates. Meanwhile, we thank you for your interest and your continued support to make the scleroderma community’s voice heard in our nation’s halls of Congress.

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