Yesterday, the FSH Society convened a landmark meeting at the Tommy Douglas Conference Center, a stone’s throw from the headquarters of the Food and Drug Administration (FDA). Several FDA regulators… Read More »
Industry collaborative workshop on FSHD clinical trial readiness
Tips and tricks: Putting on a jacket
Tips and tricks: Putting on a jacket When you are in a wheelchair and can’t raise your arms, putting on a jacket can be a contortionist’s conundrum, even with the… Read More »
Giving a piece of me for research
by HILARY A. C. HOOVER, Ocala, Florida I tested positive for the FSHD gene and am currently asymptomatic. Due to my status, I was asked to donate muscle tissue via open… Read More »
Fighting for life insurance
Excerpt from Howard Chabner‘s forthcoming FSHD Autobiography: I tried to find life insurance but brokers told me I was uninsurable because of my FSHD. Finally, one broker found a company… Read More »
Tips and tricks: STABILicers light ice cleats
Avoiding falls is especially challenging in cold winter climates, where even the most careful walker is no match for a patch of ice. Several of our members swear by strap-on,… Read More »