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FSH Society News

FSH Society Launches Nationwide Signature Walk & Roll Event

Today, The FSH Society, the world’s largest research-focused patient advocacy organization for facioscapulohumeral muscular dystrophy (FSHD), announced that it has established its first-ever nationwide signature event, the Walk & Roll to Cure FSHD. Under the unified brand, supporters anywhere in the U.S. (and beyond) can organize a “walk & roll” event to advocate for public awareness and … Read more of “FSH Society Launches Nationwide Signature Walk & Roll Event” »

Mid-Atlantic FSHD Family Day registration is open

The preliminary agenda and registration are now available for our first Mid-Atlantic FSHD Family Day Conference. It will be held in Baltimore, MD. Co-organized with Kathryn Wagner, MD PhD, and her team at the Kennedy-Krieger Institute, this meeting will update you on research ongoing at KKI as well as from other leading FSHD centers. Experts … Read more of “Mid-Atlantic FSHD Family Day registration is open” »

Spotlight: Skylar Conover

Ms. Wheelchair USA 2015-2016 By Nicky Williams Dexter If you haven’t heard of MS. Wheelchair USA 2015 and FSHer Skylar Conover, you are missing out. There is a reason why I chose her to be my very first official FSHer spotlight profile.  She is such a genuine friend with a sunny personality that so many of … Read more of “Spotlight: Skylar Conover” »

Committed To Accountability & Transparency

FSH Society is committed to excellence and accountability to our donors.

Milestones in Advocacy

FSH Society has been instrumental in rewriting (2001) and helping reauthorize (2008 and 2014) the Muscular Dystrophy Community Assistance Research and Education Act.

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