by June Kinoshita, Director of Research and Patient Engagement Making sure that every person with FSH muscular dystrophy gets the best possible medical care is a high priority for us…. Read More »
Extraordinary Measures – Updating the standard of care for FSHD
Gratitude and good wishes
by Brian Jude Loiacono As I reflect back at the year 2021, I’m sure we all can agree that with the pandemic still prevalent in all of its variants, our… Read More »
Everyday Mindfulness
At our December 13 Wellness Hour, Jennifer Egert led a short session on mindfulness in which she asked people to focus their awareness on their body sitting. Afterward, there was… Read More »
Extraordinary Measures – Understanding the socioeconomic impact of FSHD
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 »
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 »