Get Involved in the Fight to Cure FSHD

Newly Diagnosed?

FSH Society News

2018 FSHD Connect videos!

Our 2018 FSHD Connect conference was held at the Flamingo Las Vegas on June 9-10, 2018. The conference gathered together 400 patients, family members, researchers, physicians, and health experts for a day-and-a-half of intensive learning and community activism. Our meeting featured talks by thought leaders on the latest in scientific research and medical management of … Read more of “2018 FSHD Connect videos!” »

Find your voice through FSH Society radio

With 14 episodes of our monthly FSH Society Radio show now under our belt, we hope many of you are not just listening, but also considering how this medium can give our community a greater voice. At the FSHD Connect conference, host Tim Hollenback issued a call to action to the FSHD community.  The radio show, … Read more of “Find your voice through FSH Society radio” »

Stance control braces

Contributor: Kathy Senecal, Cromwell, Connecticut As a wearer of a stance control brace for 3 years, I became aware that I have not yet met another individual with FSHD wearing one. After doing a little research, there seems to be a lack of information and/or access, resulting in this type of brace being underutilized. First … Read more of “Stance control braces” »

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.

Learn More »