From PRWeb The FSH Society and Skyland Trail today announce that they are jointly entering an eight-person team in the 2019 Race Across America (RAAM) to raise funds for their respective causes. The two non-profit organizations, one focused on facioscapulohumeral muscular dystrophy (FSHD) and the other on mental health and suicide prevention, joined forces to tackle the grueling, 3,000-mile… Read More »
Team FSHD Skyland Trail will compete in the 2019 Race Across America
Chicagoland chapter members invite you to their Walk & Roll to Cure FSHD!
“For all my friends and family out there who haven’t heard, I have recently been diagnosed with FSHD which is a form of muscular dystrophy. It is a progressive disease that basically attacks my muscles, and there is nothing I can do right now to stop or slow it down. I have joined the FSH… Read More »
Our annual report card
We are honored that you chose to support us. FSH muscular dystrophy, a debilitating disease affecting nearly a million men, women, and children worldwide, has long lacked any treatment, but because of you, our families can look forward to having a therapy by the year 2025, if not sooner. Because of you, thousands of families… Read More »
Swallowing and speech in FSH muscular dystrophy
Our recent webinar featured speech language pathologist Kiera Berggren, from the FSHD clinical research center at Virginia Commonwealth University. Berggren has a passion for understanding and treating issues with swallowing (dysphagia) and speech communication, which she feels are often overlooked. Here she shares an abundance of knowledge and practical advice for FSHD patients.
Playing the hand you’ve been dealt
By Landon Poindexter One thing I have come to learn in my eighteen-year life is that no matter how hard you try, there is no avoiding hardships that are sent your way. How you deal with these hardships will define who you are. When obstacles come your way, you have two choices: play the cards… Read More »