Wealthy Facioscapulohumeral Muscular Dystrophy Patient Invests $100 Million to Find a Cure
Chip Wilson, billionaire founder of Lululemon Athletica, was first diagnosed with muscular dystrophy in 1987 at the age of 32. Wilson, who is now
The FSHD Society
The Facioscapulohumeral Muscular Dystrophy (FSHD) Society
The FSHD Society is the world’s largest research-focused patient organization for facioscapulohumeral muscular dystrophy (FSHD), one of the most prevalent forms of muscular dystrophy. We have catalyzed major advancements and are accelerating the development of treatments and a cure to end the pain, disability, and suffering endured by one million people worldwide who live with FSHD. The FSHD Society has transformed the landscape for FSHD research, and is committed to making sure that no one faces this disease alone.
Please visit www.FSHDSociety.org for more information and to access our arsenal of resources and support.
Condition Awareness & Advocacy
Here is a list of conditions this partner raises awareness and advocacy for:
Patient Worthy Posts on FSHD
ASGCT Annual Meeting: Presentation Shared Data on EPI-321 for FSHD
This year, the American Society of Gene & Cell Therapy (ASGCT) held its 26th annual meeting from May 16 through May 20, 2023. In
AOC 1020 Granted Fast Track Designation for FSHD
A January 2023 news release from biopharmaceutical company Avidity Biosciences, Inc. (“Avidity”) shares that the company’s therapy, AOC 1020, earned Fast Track designation from the
“Good Bad Things” Movie Features Man with FSHD
Actor Max Adler is known for a variety of roles in films and TV shows such as Glee, Saugatuck Cures, and Switched at Birth.
Webinar: Addressing Gaps in FSHD Clinical Trial Readiness
As part of its 2022 webinar series, the Rare Disease Cures Accelerator Data and Analytics Platform (RDCA-DAP) hosted a webinar on August 17, 2022 titled
First Patient Enrolled in Losmapimod Trial for FSHD
In a news release, biopharmaceutical company Fulcrum Therapeutics, Inc. (“Fulcrum”) shared that the first patient was dosed in the Phase 3 REACH study. Within
