Since 1998, the FSHD Society has funded groundbreaking research on facioscapulohumeral muscular dystrophy. The Society’s grants have contributed to the discovery of the genetic basis of FSHD, shed light on […]
Research We Have Funded
FSHD Society Sequester Camp
Your health and well-being are our highest priority. Many of you already felt isolated by FSHD, and with COVID-19 it became even harder to get out, or for others to […]
Early-onset FSHD
What is Early-Onset or Infantile FSHD? Early-onset FSHD (also called infantile FSHD) is a less prevalent form of FSHD characterized by facial weakness appearing before the age of 5 and/or […]
Genetic testing for FSHD—a new frontier
Several genetic diagnostics labs now offer a test called whole-genome optical mapping for FSHD Type 1. Some also offer a neuromuscular panel that includes FSHD Type 2. These are major […]
FSHD Radio: Straight Talk with Tim Hollenback
[…] Your Host, Tim Hollenback Before his diagnosis in 2016, Tim had never heard of FSHD. The day of the diagnosis he was shocked and scared. He looked for support […]