Advocates Secure New Avenue for Research Funding

A seat at the table: FSHD joins 66 conditions competing for $370 million in federal research grants

By Anna Gilmore, FSHD Society

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The FSHD community secured a big win for research funding this year: Inclusion in the Peer-Reviewed Medical Research Program (PRMRP).

Aside from being a tongue-twister of an acronym, the PRMRP is a federal grant program tucked into the Department of Defense. It doesn’t guarantee funding to any specific area, but researchers can only apply for funding if they are working on a disease included on the eligibility list. To put it another way: The PRMRP represents a $370 million pool of grant funding. Only 66 conditions can compete for those dollars, and now FSHD is one of them!

This success is owed entirely to the volunteer advocates who spent the spring calling, writing, and meeting with their Senators to ask for FSHD to be a part of this program. It takes guts to share deeply personal experiences with total strangers to open this opportunity for future research. The FSHD community has shown unrivaled devotion, openness, and vision throughout this process. We are deeply thankful to everyone who took part in this campaign. Every letter, phone call, and email made a difference in achieving this outcome!

The FSHD Society is also deeply grateful to the Muscular Dystrophy Association (MDA), who has supported and guided our efforts throughout this campaign. Their partnership has been instrumental. For more information, please visit cdmrp.health.mil/prmrp/default.aspx.

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This article was originally published in the The FSHD Advocate, 2025 Issue 2. Read the latest issue here.