Our Priorities

Our Priorities

As a community, scleroderma advocates are focused on outreach to United States Senators and Representatives to increase their understanding of scleroderma and its dramatic impact on the health of individuals and families. Symptoms of scleroderma can derail a person’s life and end a career or cause isolation from peer groups and society.

Learn More about Senate Appropriations, the PRMRP, and Researchers’ Eligibility for Federal Funding

BACKGROUND: Each year, the United States Senate crafts a 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).

For a condition to be included, Senators need to support the condition and officially ask for its inclusion on the list. Senators have many competing appropriations priorities, and to support a specific condition like scleroderma, they need to be asked to do so by their constituents. That includes you.

DOD support for scleroderma research is important! Research into the underlying mechanisms of scleroderma is showing relevance to all fibrosis, which occurs at higher rates among individuals who serve in the military and our veterans. Also, military service-associated environmental triggers (particularly silica, solvent, and radiation exposure) are believed to be linked to the onset of scleroderma in individuals who are genetically predisposed to the condition.

Scleroderma has been included as a condition eligible for study in the past, leading to PRMRP funding for nearly $10 million in meritorious and meaningful scleroderma research projects. By including scleroderma on the DOD’s eligibility list again this year, researchers focusing on scleroderma will be able to compete for and secure the federal support that will help their current work succeed.

It is especially important to get our letters in front of the Senate Defense Appropriators (list just below) – but even if your Senators do not appear on the list and you are in another state, it still is important to ask them to let their Senate Defense Appropriations Committee colleagues know that their constituents have said that this request is important to them and to everyone impacted by scleroderma.

Senate Defense Appropriators:

Jon Tester​ (D-MT), Chair
Richard Shelby​ (R-AL), Ranking Member
Richard Durbin (D-IL)
Patrick Leahy​ (D-VT)
Dianne Feinstein (D-CA)
Patty Murray​ (D-WA)
Jack Reed (D-RI)
Brian Schatz​ (D-HI)
Tammy Baldwin (D-WI)
Jeanne Shaheen (D-NH)
Mitch McConnell (R-KY)
Susan Collins​ (R-ME)
Lisa Murkowski​ (R-AK)
Lindsey Graham (R-SC)
Roy Blunt (R-MO)
Jerry Moran (R-KS)
John Hoeven (R-ND)
John Boozman (R-AR)

 

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Join the Action Alert Network.

Come and join our network of volunteer advocates. Whether it’s through a letter, fax, email, phone call, or in-person, connecting with your U.S. Representative and Senators is an important step in educating government officials about scleroderma and the impact it has on individuals and families in terms of health and economically.

Action Alerts are time-sensitive announcements sent via email when it’s time to take action and contact your Senators and/or Representative about a vote or sponsorship of a bill that impacts people affected by scleroderma.

The Foundation provides background information to help you understand the issue and how to communicate about it. The most important part of responding to an action alert is telling your scleroderma story. Government works best when legislators understand the personal impact of legislation.