[…] hand tightly. Nearly one year ago, both my husband and my son were diagnosed with FSHD. Our lives haven’t been the same since then. After our 36-year-old son Bill was […]
Have you pulled down your oxygen mask?
Lexi Pappas’ story of filmmaking and FSH muscular dystrophy
[…] Lexi Pappas, a fellow documentarian who lives with a condition called facioscapulohumeral muscular dystrophy ( FSHD). Last year, Lexi’s own documentary about her family’s four-generation journey with FSHD, went viral. […]
The future is in powerful hands: YOURS
[…] has reached a crossroads. Some companies that have promising drugs are delaying investment in their FSHD programs because they perceive a lack of accepted criteria to prove that a drug […]
Help Wanted: UC Irvine study seeks volunteers
[…] to the initial notice calling for volunteers to participate in the UC Irvine study of FSHD. The study seeks to investigate a new method to measure functional mobility in the […]
Why I made the FSH Society a beneficiary in my will
[…] if not us, then who? by Deborah Schwartz, New York City I was clinically diagnosed with FSHD two years before the FSH Society came into being. Mine is a spontaneous mutation. […]