Every connection counts and there are many ways to plug in to the FSHD community. From fundraising events to educational offerings available online and in person, there is something for everyone!
The Walk & Roll to Cure FSHD is the signature fundraising event for FSHD. Led entirely by local volunteers, happening in communities across the US, the Walk & Roll allows you to team up with friends, loved ones and co-workers to change the world for everyone affected by facioscapulohumeral muscular dystrophy.
The FSHD Community’s forum to present testimony and educate the FDA on how FSHD has impacted your life or the life of your loved ones.
We encourage everyone—patients and family members, at every stage of disease progression—to get involved.
FSHD Connect, our bi-annual conference, brings together hundreds of patients, family members, researchers, physicians and health experts for a day-and-a-half of immersive learning and community building.