This study is an observational study that aims to advance our knowledge on infantile onset
FSHD. The study will include 50 participants of all ages who have presented with symptoms of
FSHD between birth and 10 years of age. Study participation will involve a single day of
assessments at one of the participating CINRG centers (to include physical exam, cognitive
testing, eye exam, hearing test, strength testing and speech evaluations). The procedures may
be split over additional days for scheduling purposes.