We note the three-year anniversary of Carol Anne Perez’s death at age 76, on February 3, 2012, from respiratory complications of FSHD. Many patients remember Carol as the person on the… Read More »
Remembering Carol Perez
University of Kansas seeks volunteers for study
FSHD patients are needed for a research study for: The Relationship of Electrical Impedance Myography to Muscle Structure and Function in Facioscapulohumeral Muscular Dystrophy (FSHD). The study is directed by Jeffrey… Read More »
UC Davis study is seeking volunteers
We have been notified that researchers at the UC Davis Medical School are seeking FSHD patients to volunteer for a study. Read here about why participating in research is so… Read More »
Our team is growing!
The FSH Society team is expanding, with two new staff members, Diane Burke and Kristin Duquette, taking key positions to enable the organization to meet critical challenges in the coming… Read More »
aTyr Announces First FSHD Clinical Trial of Resolaris™
San Diego-based biotech company aTyr Pharma announced today its first clinical trial in FSHD patients of its investigational new drug Resolaris™. The Phase 1b/2 study is a double-blind, placebo-controlled, multiple ascending dose… Read More »