Analysis of FSHD registry data overturns prior ideas about genetic and gender factors by Natalie Katz, MD, University of Rochester Facioscapulohumeral muscular dystrophy is a highly variable disease. While we… Read More »
Artificial intelligence reveals some surprises
A children’s book about resilience
My name is Monica Boeh and I live with FSH muscular dystrophy. I have a master’s degree in education, and I have been working for a nonprofit organization whose vision… Read More »
Overcoming communication barriers with Project Relate
FSH muscular dystrophy often affects the muscles of the face, including the mouth. This can affect the ability to smile and can impair speech. Many people with FSHD experience the… Read More »
Extraordinary measures – Educating doctors
by Jamshid Arjomand, PhD, chief science officer It can take nearly a decade for the average person with FSH muscular dystrophy to get a correct diagnosis. Once they are finally… Read More »
Extraordinary Measures – Many shots on goal
by Jamshid Arjomand, Chief Science Officer With a dozen or more potential FSHD therapies in the drug development pipeline, why is the FSHD Society continuing to invest substantial funds− a… Read More »