The FSHD Society, the world’s largest research-focused patient advocacy organization for facioscapulohumeral muscular dystrophy (FSHD), announced that it will hold a slew of virtual Walk & Roll to Cure FSHD events this September 12. The online events will take the place of dozens of in-person gatherings that had been planned for this summer and fall…. Read More »
Nationwide Virtual Walk & Roll for FSH Muscular Dystrophy
Tips and Tricks – The IndeeLift
by Dani Liptak I get up in the middle of the night to use the bathroom. I take a step from my bed, reach for my walker, and instantly hit the floor with such force I knock the wind out of myself. My cat goes scurrying by, and I wishfully hope she is going to… Read More »
Finding a way to keep working
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 »
‘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 »
Facioscapulohumeral muscular dystrophy community speaks to the FDA
The FSHD Society is holding a landmark meeting today in which individuals and families living with facioscapulohumeral muscular dystrophy (FSHD) will tell representatives from the U.S. Food and Drug Administration (FDA) about how the muscle-wasting disease affects their health, and what they hope future treatments will do to improve their quality of life. One of… Read More »