FSHD Society History - Education - Outreach

What is the FSHD Society?

We are the world’s largest grassroots network of individuals with FSH muscular dystrophy, their families, and research activists. The FSHD Society was founded in 1991 by two patients, Daniel Perez and Steve Jacobsen, sitting around a kitchen table.

Today, the FSHD Society consists of dozens of volunteer-led chapters across the US and Canada, as well as affiliates across the globe. Through an amazing staff-volunteer-stakeholder partnership, we deliver education; drive outreach; fund scientific and medical research; and advocate for increased government and industry investment in FSHD.

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We have transformed the landscape

Patients once had no place to turn for help. There was virtually no research on FSHD. The FSHD Society raised funds that launched many areas of FSHD research.

We helped to write the MD-CARE Act (2001), which led to the creation of the NIH-funded Wellstone Centers for FSHD research.

The FSHD Society has invested over $10 million in research, contributing to the discovery of the genetic cause of FSHD and igniting interest by more than a dozen biotech companies in developing treatments.

We are taking action to:

Solve the biological disease process.
Build critical infrastructure to accelerate research.

Improve patient care nationwide.
Speed up development of treatments.

To respond to these challenges, we have launched our FSHD Therapeutics initiative to accelerate the development of treatments and a cure to our families by the year 2025.