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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 […]
[…] 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 […]
[…] 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. […]
[…] 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 […]
[…] 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 […]
