Extraordinary Measures

Taking Extraordinary Measures to End FSHD!

Discovering the Cause and the Cure for FSHD

30th Annivaersary Badge

The FSHD Society was founded on the idea that we had to do something extraordinary to discover the cause and cure for FSHD.

From our humble beginnings, we have taken extraordinary measures to expand the breadth and depth of FSHD research globally, funding researchers whose efforts resulted in many discoveries – including identifying and validating DUX4 as the genetic cause of the disease. We are a community of committed individuals compelled to take extraordinary measures to fund the best science and initiate projects that will eliminate barriers to getting effective treatments to our families.

Together we play an oversized role in eliminating the obstacles to clinical trial success while working to provide a regulatory path for therapies aimed at halting FSHD.

Empowered by you, the FSHD Society funds scientific grants… and so much more:

Research Grants: This year we received 41 researcher-initiated proposals, nearly double the number in a typical year. While the pandemic negatively impacted many muscular dystrophy funding organizations, your steadfast support has allowed us to meet this “extreme need,” ensuring the best research will be funded and move forward. We have approved almost $2 million this year — extraordinary measures.

Therapeutic Accelerator Initiative: In consultation with pharmaceutical and academic researchers specializing in biomarkers, imaging, and trial-readiness, we design and implement projects through commercial research companies and academic labs to solve key gaps inherent in FSHD. This year we will invest approximately $1 million to move these initiatives forward — extraordinary measures.

Industry Partnerships: We are working with 15+ biopharmaceuticals providing necessary collaboration, connection, and consultation. Led by our Chief Science Officer, the FSHD Society works as a convener to bring academic researchers and industry together to encourage continued therapeutic development. We host the largest International Research Congress on FSHD and build funding alliances aimed at targeting and eliminating common obstacles — extraordinary measures.

Empowered & Engaged Community: Scores of volunteers across North America have stepped up to lead 33+ chapters. More than 20 countries participate in the FSHD Society-led World Alliance. This community participates in surveys, testifies before the FDA, and serves on biopharmaceutical advisory groups. This network is activating the powerful forces of an educated, empowered, and engaged community that will stop at nothing to facilitate treatments to our families — extraordinary measures.