Advocacy

Action Alert FY2025


ACTION ALERT: 
Contact your Senators and ask them to support the inclusion of “Scleroderma” in the Peer-Reviewed Medical Research Program during the Fiscal Year (FY) 2025 appropriations process!

Background:

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). 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 for them to support a condition-specific request, they need to be educated and asked to do so by their constituents. This can be written by the person living with scleroderma, caregivers, and friends. Please share with your networks.

Historically when scleroderma has been included as a condition eligible for study, the PRMRP has funded over $13 million in meritorious and meaningful scleroderma research projects. In addition, there has been specific support for scleroderma research indicating the effectiveness of our researchers. Research on 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. Further, military service-associated environmental triggers, particularly silica, solvent, and radiation exposure, are believed to be linked to the onset of scleroderma in individuals that are genetically predisposed to the condition.

Senators are currently working on the FY 2025 DOD appropriations bill and deciding which conditions will be included on the next PRMRP eligible conditions list. At this critical juncture, please reach out to the offices of your Senators and ask that they “support the inclusion of scleroderma in the DOD PRMRP’s eligible conditions list in FY 2025.”

TAKE ACTION: 

Contact your Senators and ask that they support the inclusion of scleroderma in the Department of Defense’s Peer-Reviewed Medical Research Program. We ask that you reach out to your Senators no later than September 30, 2024.

Recipients

  • Your Senators

Contact

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Message

Dear [Decision Maker],

Thank you for your leadership on patient care and public health issues. I write you today on behalf of the community of individuals affected by scleroderma to ask that you work with your colleagues to ensure that "scleroderma" is once again listed as a condition eligible for study through the Department of Defense Peer-Reviewed Medical Research Program (PRMRP) within the Committee Report accompanying the Senate's FY 2025 Defense Appropriations Bill.



Scleroderma is a chronic connective tissue auto-immune disease affecting approximately 300,000 Americans. The word scleroderma means hardening of the skin, which is one of the most visible manifestations of the disease. With an auto-immune disease, the body attacks its own tissues. In the case of scleroderma, the body produces too much collagen which leads to scarring and fibrosis of the skin and often internal organs.

Scleroderma may cause serious damage to internal organs such as the lungs, heart, kidneys, esophagus, and gastrointestinal tract. Serious complications of the disease can include pain, skin ulcers, anemia, and pulmonary hypertension. The cause of this progressive and potentially fatal disease remains unknown. There is no cure, and treatment options are limited. Symptoms vary greatly and are dependent on which organ systems are impacted. Prompt diagnosis and treatment by a qualified physician may improve health outcomes and lessen the chance for irreversible damage. Research on 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. Further, military service-associated environmental triggers, particularly silica, solvent, and radiation exposure, are believed to be linked to the onset of scleroderma in individuals that are genetically predisposed to the condition.

I hope you will work with your colleagues in support of once again listing scleroderma in FY 2025 as a condition eligible for study through the annual list on the Committee Report accompanying the Senate's FY2025 bill.

On behalf of scleroderma affected constituents, thank you for your time and your consideration of this request.

Sincerely,
[Your Name]
[Your Address]
[City, State ZIP]
[Your Email]