Current Campaigns

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!

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