by Haviva Ner-David Part II of excerpts from Dreaming Against the Current. I decided to talk directly to my disease. After thirty-two years, it was about time. “Are you willing… Read More »
Talking to my FSHD
Extraordinary Measures – Updating the standard of care for FSHD
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 »
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 »