by Jennifer Egert, PhD, New York City After being involved with the FSHD Society for more than 10 years, participating in fundraisers, social media, and events, I finally made it… Read More »
FSHD Connect is a game changer
Why Your Voice Matters
This April 21, the FSHD Society is holding its landmark Voice of the Patient Forum on drug development for FSH muscular dystrophy. You will be hearing a lot about it… Read More »
Voice of the Patient Forum [VIDEO]
Recorded on January 20, this informational video discusses the upcoming Voice of the Patient Forum (or patient-focused drug development meeting) for facioscapulohumeral muscular dystrophy (FSHD) that is being organized by… Read More »
FAQs about genetic testing for FSHD
Julie Cohen, MSc, genetic counselor Julie Cohen, ScM, genetic counselor in the Center for Genetic Muscle Disorders at the Kennedy Krieger Institute in Baltimore, Maryland, answers some commonly asked questions…. Read More »
FSHD goes to school
by Kristin Zwickau New England Chapter Director Having a child diagnosed with a complex, serious disease that causes disabilities is a very hard reality for parents to deal with, let… Read More »