Our History

The FSHD Society began in 1991, when two individuals living with FSHD, Daniel Perez and Steve Jacobsen, sat around a kitchen table determined to change the future of this disease. At the time, there was little research, no treatments, and nowhere for patients to turn for help.

What started as a small group of dedicated advocates has grown into the world’s largest research-focused FSHD patient organization.

Today, the FSHD Society is a global force with volunteer-led chapters across the United States and Canada, as well as international partners working to drive progress. Through the dedication of patients, families, volunteers, scientists, and advocates, we:

  • Build critical infrastructure to accelerate research and clinical trials
  • Educate and connect individuals living with FSHD
  • Advocate for stronger policies and investments in FSHD research

FSHD Society Timeline 1991-2020

Changing the Future of FSHD

The FSHD Society has played a critical role in shifting FSHD from an underfunded condition to an area of active drug development and scientific discovery. Some of our biggest milestones include:

  • Advocating for and co-authoring the MD-CARE Act (2001), which led to the creation of the NIH-funded Wellstone Centers for FSHD research
  • Investing over $12 million in research that led to the discovery of the genetic cause of FSHD
  • Driving interest from more than a dozen biotech companies now working on potential treatments
  • Our commitment remains the same: no one should face FSHD alone, and together, we will continue to power the path forward.

Click the image for a detailed timeline of our progress.

Where We’re Focused Today

We are committed to turning scientific progress into real change for people living with FSHD. Our work includes:

  • Speeding the development and delivery of treatments through industry collaborations and funding studies
  • Driving advocacy efforts to ensure FSHD is a priority for government agencies, policymakers, and insurers
  • Expanding patient education and resources through initiatives like BetterLife, FSHD Navigator, our robust Chapter Program, and regional conferences
  • Strengthening our global network by connecting individuals, families, and researchers to create a stronger, more informed FSHD community

With each milestone, we move closer to a future where treatments are available, access is equitable, and no one faces FSHD alone.