KeyWay Report on Our Speaker

Jack Gerblick and Bob O’Brien on

Facioscapulohumeral Muscular Dystrophy (FSHD)
Atlanta West End Rotary Program at Georgia Tech, December 19, 2025

Rose Caplan presented Bob O’Brien longtime friend of and co-worker with Jack Gerblick,. Bob introduced Jack, who explained a disease called Facioscapulohumeral Muscular Dystrophy (FSHD). Jack is the director of the Atlanta Chapter of the FSHD Society, one of thirty chapters in the USA and Canada. The presentation covered what FSHD is, its symptoms, the community-building efforts of the FSHD Society, and the progress being made toward treatments and potential cures. 

FSHD is a genetic muscular dystrophy (it is similar but also quite different from Lou Gehrig’s Disease) affecting 40,000 to 60,000 people in the United States. Unlike other muscular dystrophies that progress linearly, FSHD follows a step progression or accelerated progression pattern, where patients may be stable for months or years before suddenly losing an entire muscle group. The disease typically begins presenting symptoms during the teenage years, though it can appear earlier, as in Cardin Wyckoff’s case at age nine, or may not be diagnosed until much later in life. Jack was not diagnosed until age 32. Progression varies significantly even within families; siblings with the same genetic mutation may experience vastly different severity and timing of symptoms. Common symptoms include inability to raise arms, weakness in hands and feet, foot drop, lordosis of the back, sunken chest, chronic fatigue, and pain. Jack also emphasized that FSHD does not discriminate. While studies show higher prevalence in certain populations or families, the disease affects people regardless of ethnicity or background.

 Bee Long asked about possible cures and promising developments? Jack responded: There will likely be multiple therapies. The clinical trial Jack is participating in aims to stop disease progression, which would be significant even if it only slows progression by 50%. Additionally, researchers are working on muscle regeneration therapies, potentially creating a "cocktail" approach that would stop progression and then rebuild muscle. Recent advances in gene therapy show particular promise, with several drugs currently in clinical trials. The FSHD Society has successfully advocated for inclusion in a Department of Defense program that funds research for 60 rare diseases, opening access to a pool of $350-400 million in potential research funding.

The Society has established a World FSHD Alliance to help countries around the world build patient advocacy organizations. Their most recent quarterly meeting included representatives from 35 different countries, demonstrating the growing global effort to combat FSHD .

The FSHD Society focuses on building community, raising awareness, and fundraising. The FSHD Society’s annual premier Walk and Roll event serve as the primary fundraising, awareness and community-building activities. Jack said Atlanta Chapter has raised $450,000 in the last six years. Rose Caplan said she would help organize AWER’s participation in the October 11, 2026 FSHD Society’s awareness and fundraising event at the Chattahoochee Nature Center.

AWER Speaker Reporters:

Jared Evans and Neil Shorthouse