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 »
Why Your Voice Matters
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 »
We Are Not Alone
BY DAVE LUKAS CRYSTAL LAKE, ILLINOIS The inaugural Chicagoland Walk & Roll to Cure FSHD exceeded every expectation and goal I had. What an amazing day filled with family, community,… Read More »