This May 5, the FSHD Society is participating in #GivingTuesdayNow. This is a global day of giving and unity that arose as an emergency response to the unprecedented need caused… Read More »
FSHD Society participating in #GivingTuesdayNow
Member of the team
Getting involved in research is about so much more than helping yourself by Jim Albert, Eldersburg, Maryland Patients who are new to research may be trying to decide if clinical… Read More »
“Coming out” with my FSHD diagnosis
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 »
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 »