Current & Upcoming Initiatives
Advocate for a New Source of FSHD Research Funding
The Peer Reviewed Medical Research Program (PRMRP) is a federal grant program that supports scientific research. This year, in partnership with the Muscular Dystrophy Association (MDA), we are campaigning to get FSHD included on the list of eligible conditions for this grant program. Becoming one of the eligible diseases for this grant would open up a new potential source of funding for much needed ongoing basic research. We’ve come such a long way in recent years, but there is still so much we don’t know about FSHD.
This campaign will take place from March 15 – April 15. We need your voice to help make these funds available to FSHD research! Our Call to Action is to please reach out to your US Senators, and ask them to support this request. Follow the steps below to take action today!
Choose your state from the drop-down menu to find your Senators: https://www.senate.gov/senators/senators-contact.htm
Their names, mailing addresses and phone numbers are listed below their pictures. You can click on the blue Contact link to be directed to their webpage. Most have either an email address or a contact form through which you can submit your letter. Because of the tight timeline we’re working on, we recommend you submit your testimony through email or the web contact forms, or make a phone call to the Senator’s office.
There are templates for letters and draft scripts phone calls in the section below. Once you have reached out to your elected officials, don’t forget the final step! Let us know, so that we can build the momentum needed to carry this project forward.
Decide how you’d like to contact your Senators.
- If you prefer to send an email, click here to download a message template
- If you’d rather make a phone call, click here to download a list of talking points
Each template has items in [brackets], that should be customized. Don’t forget to personalize, and add any pertinent information or anecdotes from your personal experience! Most importantly, ASK FOR THEIR SUPPORT of including FSHD on the eligibility list for the PRMRP.
Once you’ve contacted your elected officials, please let us know here: https://forms.gle/zi1RFkfmabQ8DVEK7
Know how many communications are being sent, and who’s receiving them, helps us strategize and prioritize how we push forward to ensure this campaign is successful.
THANK YOU for sharing your voice! Your advocacy is making a real, long-term impact on understanding, and ultimately treating, FSHD.
It is crucial that FSHD voices are heard.
By engaging with elected officials, regulatory agencies, and government offices, we can make a big difference in getting treatments to families faster. Leveraging these networks to expand the awareness and understanding of FSHD, we can help source funding, build collaborations, and expedite review processes to break down barriers in drug development.
FDA Listening Session on Upper Body Mobility
Most think of mobility as synonymous with a person’s ability or inability to walk. However, for an overwhelming majority (96% according to multiple studies) of those with FSHD suffer a loss of upper-body mobility, characterized by weakness in the upper arms, shoulders, and trunk. This facet of the disease has an outsized impact on a person’s ability to perform tasks of daily living and maintain their independence.
In August 2024, the FSHD Community helped the FDA understand this aspect of living with FSHD. The people who bravely shared their experiences were unanimous in expressing that FSHD is a truly relentless disease, and the need for a treatment is urgent. Read more in the report below.
Day on Capitol Hill: May 8th, 2024
On May 8th, the FSHD Society held its first-ever Day on Capitol Hill in Washington, D.C. This milestone in our advocacy efforts brought together over a dozen individuals living with FSHD and their families from across the country to have their voices heard by legislators. Throughout the day, advocates engaged in 15 meetings with lawmakers and their staff, aiming to secure support and raise awareness about FSHD.
Our primary goal for this Hill Day was to bring attention to the unique challenges faced by people living with FSHD and to advocate for awareness and policies that would significantly improve lives. We asked legislators to take action by signing on to our resolution recognizing June 20th as World FSHD Day. We’re excited to report that we were successful in getting sponsors for the resolution, and it was introduced on June 18th, 2024!
On May 8th, we advocated for the national designation of June 20th as World FSHD Day. Read the drafted resolution here.
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:
Future Plans
Stay tuned for upcoming projects & campaigns! We have big plans, and we want your voice to be heard loud and clear.