The FSHD Society is partnering with researchers on an important study of the impact of COVID-19 on the muscular dystrophy community. Please read this letter from Dr. Rabi Tawil and click on the link below to take the survey. Deadline is May 22, 2020. Thank you! Dear Participant, We are reaching out to people in… Read More »
Participate in COVID-19 Survey
FSHD Society participating in #GivingTuesdayNow
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 by COVID-19. This is a day when we can all come together and give back, no matter who or where we are. Every act of… Read More »
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 studies are something in which they want to participate. They might wonder, Am I a good fit? Will this study benefit me? I hope this… 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 Kelly Mahon Arlington, Virginia My hands were shaking and my stomach was doing somersaults. You can do it, the voice in my head said. I… 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 resources to travel long distances may never have the opportunity to receive state-of-the art medical care for their condition. That is about to change. One… Read More »