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FSH Society News

Los Angeles FSHD Family Day videos

We are pleased to share these videos from our 2017 FSHD Family Day conference in Los Angeles, held on October 21, 2017. We are so grateful to Laurie Heyman and Selina Lai for their help with programming and event logistics; David Garden for recording the conference video; and Ellen Rennell for editing the videos. A … Read more of “Los Angeles FSHD Family Day videos” »

Project 2025

Dear Friends, At the FSH Society, our moonshot is to get to a treatment for FSHD―an intervention that will slow or halt the muscle deterioration. We have set a target year, 2025, a date our scientific advisors agree is realistic to get the first disease-modifying drug to our families. It is an ambitious goal, but … Read more of “Project 2025” »

2018 FSHD Connect preliminary agenda

We’re excited to share with you the preliminary agenda for our 2018 FSHD Connect conference, where a coalition of patient and families, top researchers and clinicians, and advocates will gather to learn about the state of the field, advances in treatment research, and living well with FSHD. Back by popular demand to give her “FSHD … Read more of “2018 FSHD Connect preliminary agenda” »

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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