Our new issue of the FSHD Advocate, the first of 2021, is now available online. For those of you who receive our flagship magazine by the postal service, it will be arriving over coming weeks. As the cover and stories inside emphasize, the FSHD Society’s most important role in working toward a treatment is in… Read More »
Hot off the press – FSHD Advocate
“Our stories need to be shared”
An interview with Tim Hollenbeck, FSHD Radio host On the second Tuesday of every month, at 8 p.m. CT, Tim Hollenbeck fires up a live video stream on the FSHD Society’s YouTube channel to chat with a parade of interview guests, share news, and offer words of encouragement in his calm and cheerful baritone. With… Read More »
What a difference 30 years have made
Time flies when you have your nose to the grindstone, working with focus and determination on a lofty goal. It has been an amazing 30 years since Daniel Perez and Steve Jacobsen started the Society. Back then, almost no one was doing research on facioscapulohumeral muscular dystrophy (FSHD). The human genome had not yet been… Read More »
Have a bigger impact than ever
In this year of unprecedented upheaval and uncertainty, you may wonder if you can continue to support your favorite cause (the FSHD Society!) with your yearly gift. Instead, consider becoming a Torch Bearer – by joining our newly named monthly giving program! By making a small monthly gift, in an amount that you’re comfortable donating… Read More »
We Heard Your Voice
by June Kinoshita, FSHD Society On June 29, 2020, the FSHD Society convened its landmark Voice of the Patient Forum. Patients and family members testified by livestream and email to educate the FDA on how FSHD has impacted their lives. More than 600 people responded to our surveys and provided statements which have been compiled… Read More »