Our new FSHD 101 video

Our new video explains the basic facts about facioscapulohumeral muscular dystrophy–the symptoms, how it affects those who have it, how it is inherited, and how many people are affected. Watch it and share it to help educate others about FSH muscular dystrophy. Thank you to Taylor Toole for compiling this video. Image and video credits: … Read more of “Our new FSHD 101 video” »

Stance control braces

Contributor: Kathy Senecal, Cromwell, Connecticut As a wearer of a stance control brace for 3 years, I became aware that I have not yet met another individual with FSHD wearing one. After doing a little research, there seems to be a lack of information and/or access, resulting in this type of brace being underutilized. First … Read more of “Stance control braces” »

Talk Radio: From finance to fashion with Curt Calder

Join us on June 27th, 9:00 PM EST / 8:00 PM CST for a live, on-air interview with Curt Calder, co-founder of AnsonCalder, a leather accessories company that weds artisan materials and fine craftsmanship with minimalist, functional designs inspired by his experiences as a busy finance professional living with FSH muscular dystrophy. You can stream the show … Read more of “Talk Radio: From finance to fashion with Curt Calder” »

FSH Society Announces Third Annual World FSHD Day, Taking Place on June 20, 2018

The FSH Society is excited to celebrate the Third Annual World FSHD Day and join the global effort to raise awareness to FSHD on June 20, 2018. To build on our successes of the past two years, we’re calling upon you—our biggest supporters—to spread the word! We ask that you join us along with members … Read more of “FSH Society Announces Third Annual World FSHD Day, Taking Place on June 20, 2018” »

Rochester FSHD Family Day videos

Watch the videos here. The University of Rochester Fields Center for FSHD Research has posted a summary and videos from the 6th annual FSHD Family Day Conference held on April 7, 2018. Jointly sponsored by the University of Rochester, Leiden University Medical Center, and the FSH Society, the meeting presented the latest developments in FSHD … Read more of “Rochester FSHD Family Day videos” »