Government Advocacy

The FSHD community needs your voice to influence change! Each year, we advocate for the needs of patients and families to influence policy, research funding, and accessibility.

Current Campaign

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 – which means we are looking for State Advocacy Leaders who are willing to spearhead efforts in their state to speak to their Senator’s offices. More information on this important volunteer role coming soon.

In April and May, we will need EVERYONE to write letters, send emails, and make phone calls to their Senators… keep an eye out for more information to be posted soon!

Volunteer Today

Ongoing Initiatives

Find out how you can get involved and start advocating for FSHD right now!

Current Campaigns

Other Advocacy Efforts

There are other organizations advocating for policy that helps people with FSHD. Follow the links below to read more about advocacy projects and calls for action from our partner organizations.

MDA Action Center

EveryLife Foundation Action Alerts

National Organization for Rare Disorders Driving Policy

Progress to Date

Our efforts have been met with success as the FSHD Society has achieved unprecedented visibility and attention for FSHD. Here are some examples of our advocacy milestones over the past decade.

MD Care Act

MD-CARE Act 2001. The FSHD Society was instrumental in rewriting the MD CARE ACT 2001 to meet the needs of the entire community—people with all nine major types of muscular dystrophy. On December 18, 2001, Congress passed the Muscular Dystrophy Community Assistance Research and Education Act (MD CARE ACT), a law mandating research, study, and education on each type of muscular dystrophy. The law established the Muscular Dystrophy Coordinating Committee (MDCC) oversight committee to coordinate activities across the NIH, national research institutes, and federal health programs relating to all forms of muscular dystrophy. The MDCC is responsible for developing and implementing a plan for conducting and supporting research and education on muscular dystrophy, measuring progress, and periodically reviewing and revising the plan.

MD-CARE Act 2008. The FSHD Society was also quite involved with the MD CARE ACT 2008 reauthorization process and made suggestions and comments to strengthen the Act for all non-Duchenne muscular dystrophies.

MD-CARE Act 2014 Re-authorization. The FSHD Society provided extensive commentary and status updates to the MDCC on progress in FSHD research and patient care, as well as recommendations of priority areas for the future.