[…] 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 […]
The future is in powerful hands: YOURS
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. […]
Have you pulled down your oxygen mask?
[…] 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 […]
The flu season is upon us. Should you get the vaccine?
FSHD patients may be concerned about the effect of injections on their muscles, and others worry about exposure to chemicals in vaccines, but FSHD medical experts agree that any […]
An urgent call to action
This year-end webinar by FSHD Society CEO Mark Stone is a must watch. He lays out our detailed strategy that will get treatments for FSHD to our families by the […]