by Lynn Stevens, Bossier City, Louisiana About 10 years ago, the progression of FSHD on my body forced me to begin evaluating whether I should continue trying to work full-time or consider what was next for me. I couldn’t imagine sitting on the sidelines, as this was not in my DNA (pun intended). But after… Read More »
Finding a way to keep working
‘Eddie-mechanics’ was my secret to success
by Ed Barocas, Montclair, New Jersey In spring of 2019, I received two awards for my legal work, the New Jersey Law Journal’s Attorney of the Year Award, and the American Civil Liberties Union’s Roger Baldwin Award for a lifetime of defending civil liberties. The ceremonies were beautiful but bittersweet. I had announced my retirement… 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 »