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Mid-Atlantic FSHD Family Day presentations

Attendees at our FSHD Family Day conference in Baltimore this past Sunday enjoyed an excellent series of talks by the clinicians and researchers at the Kennedy Krieger Institute. Here are their slides (pdf).  Living with FSHD by Kathryn Wagner FSHD Genetics by Julie Cohen FSHD Activity and Exercise Whole-body MRI by Doris Leung Clinical Research … Read more of “Mid-Atlantic FSHD Family Day presentations” »

Talk radio: Skylar Conover, Ms Wheelchair USA

Skylar Conover is excited about acquiring a service dog and will be talking about the experience as she joins Tim Hollenback on Thursday, November 1, 2018, for a live interview. As 2015 Ms. Wheelchair USA, Sklyar shared her journey as a young woman diagnosed with FSH muscular dystrophy and has become a national advocate. Since … Read more of “Talk radio: Skylar Conover, Ms Wheelchair USA” »

Don Nemke’s Tips for Living with FSHD

by Don Nemke, Oro Valley, Arizona My name is Don Nemke and I’m 72 years old.  I’ve had symptoms of FSH Muscular Dystrophy starting 60 years ago and was formally diagnosed about 54 years ago.  I’m currently in an advanced stage of FSH and recently fully wheelchair-bound. As an older patient with FSHD muscular dystrophy I … Read more of “Don Nemke’s Tips for Living with FSHD” »

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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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