This story about “coming out” with an FSHD diagnosis was first published in the 2014 summer issue of the FSH Watch newsletter. Its message is timeless. The #FSHDselfies campaign by… Read More »
“Coming out” with my FSHD diagnosis
Telemedicine for FSHD
Telemedicine for FSHD is an idea whose time has come! If people with FSHD are rare, doctors who understand FSHD are rarer still. Patients who don’t have the time or… Read More »
Travel report: Boston Abilities Expo
by Danielle Liptak, Leland, North Carolina Last fall, I traveled with my parents to Boston for the Abilities Expo. It was a great trip and I’d like to share my… Read More »
Press release from Fulcrum Therapeutics
Fulcrum Therapeutics Provides Business Update on Impact of COVID-19 CAMBRIDGE, Mass., April 2, 2020 – Fulcrum Therapeutics, Inc. (Nasdaq: FULC), a clinical-stage biopharmaceutical company focused on improving the lives of… Read More »
What would be meaningful benefits of future treatments?
The current COVID-19 crisis has forced us to postpone the Voice of the Patient Forum. We will be rescheduling it for the earliest feasible date. In the meantime, we hope… Read More »