Campagnes en cours

Are you ready to advocate for the FSHD community? We need your voice to help influence hearts and minds! By working together, we can make sure that our elected officials, and those with the power to make change, are representing the needs of FSHD patients and families.

Learn more about the actions you can take right now and keep an eye on this page for updates!

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PRMRP Funding Renewal

The Peer Reviewed Medical Research Program (PRMRP) is a government grant fund that supports research into select conditions. To be eligible, our U.S. Senators must include FSHD as part of their Appropriations requests. For the first time last year (2025), we successfully campaigned to get FSHD included as one of the approximately 66 conditions competing for $370 million in medical research funding!

It’s almost time to renew our eligibility for this program – And EVERY VOICE COUNTS! Please take a few minutes to send a message, write a letter, or make a phone call to your U.S. Senator to let them know this is important to you. Use the templates below to make your voice heard! 

How to Contact Your Senators Letter Template Call Script

Call to Action

In 2024, we successfully advocated to introduce a House Resolution recognizing World FSHD day. Read all about our inaugural Day on Capitol Hill. Our deepest gratitude to Rep. Dingell (MI) and Rep. Kelly for their bipartisan sponsorship!

Ask your elected officials to renew this resolution and to recognize World FSHD Day.
View the resolution

Find your elected representatives

Please send any questions to: Anna Gilmore, Sr. Director of Advocacy & Education: anna.gilmore@FSHDSociety.org