An aspect that is often overlooked during drug development is a cost-benefit analysis of a therapeutic treatment. Insurance companies often determine the level of coverage they are willing to provide… Read More »
Extraordinary Measures – Understanding the socioeconomic impact of FSHD
Talking to my 16-year-old self
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 »
Artificial intelligence reveals some surprises
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 »
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 »