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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 […]
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 […]
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 […]
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 […]
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 […]
