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” »

Acceleron Receives FDA Orphan Drug Designation for ACE-083

From BusinessWire CAMBRIDGE, Mass.–(BUSINESS WIRE)–Acceleron Pharma Inc. (NASDAQ:XLRN), a leading biopharmaceutical company in the discovery and development of TGF-beta therapeutics to treat serious and rare diseases, today announced that the United States Food and Drug Administration (FDA) has granted orphan drug designation for ACE-083, the Company’s locally acting “Myostatin+” muscle agent, for the treatment of … Read more of “Acceleron Receives FDA Orphan Drug Designation for ACE-083” »

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” »

2018 FSHD Connect videos!

Our 2018 FSHD Connect conference was held at the Flamingo Las Vegas on June 9-10, 2018. The conference gathered together 400 patients, family members, researchers, physicians, and health experts for a day-and-a-half of intensive learning and community activism. Our meeting featured talks by thought leaders on the latest in scientific research and medical management of … Read more of “2018 FSHD Connect videos!” »

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” »