by Haviva Ner-David The last line of my author bio reads: “Rabbi Haviva Ner-David lives with a degenerative genetic form of muscular dystrophy called FSHD, which has been one of… Read More »
Talking to my 16-year-old self
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 »
FSHD Inspires Sam Ray to Build Mobility Devices
by Paul Winn, Brain & Life. Reposted with permission. Sam Ray, a 15-year-old, in Tucson, AZ, talks to our writer Paul Wynn about how his rare disease motivated him to… Read More »