FSHD Stories

  • Spotlight: Skylar Conover - Ms. Wheelchair USA 2015-2016 By Nicky Williams Dexter If you haven’t heard of MS. Wheelchair USA 2015 and FSHer Skylar Conover, you are missing out. There is a reason why I chose her to be my very first official FSHer spotlight profile.  She is such a genuine friend with a sunny personality that so many of … Read more of "Spotlight: Skylar Conover" »
  • 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" »
  • Find your voice through FSH Society radio - With 14 episodes of our monthly FSH Society Radio show now under our belt, we hope many of you are not just listening, but also considering how this medium can give our community a greater voice. At the FSHD Connect conference, host Tim Hollenback issued a call to action to the FSHD community.  The radio show, … Read more of "Find your voice through FSH Society radio" »
  • 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" »
  • World FSHD Day backstory - Italian brothers’ ordeal sparks a global movement As we approach our third annual World FSHD Day this June 20th, and the international FSHD community plans to flood their social channels with messages and images to bring attention to the day, we’d like to share the backstory of how June 20 came to be World FSHD … Read more of "World FSHD Day backstory" »
  • My journey from powerless to powerful - by Dave Lukas, Lake In the Hills, Illinois Three years ago, my life was changed forever. Three years ago, I walked out of a doctor’s office, got in my car and sobbed. Three years ago, my image of what my future looked like was shattered. Today, my life is still changed forever. Today, I leave … Read more of "My journey from powerless to powerful" »
  • Moving toward well-being - Muscular dystrophy is a part of me, but it does not have me by DAVID YOUNGER, PhD Austin, Texas I was diagnosed with FSHD when I was about four, at the same time my mother and grandmother were diagnosed. The only symptoms I had at that point were that I slept with my eyes partially closed and a … Read more of "Moving toward well-being" »
  • Living with FSHD – My journey to a diagnosis - by Angela Davis, Marquette, Michigan I first started noticing something was a bit off when I was around age 15. People often asked if I hurt my leg or knee. They said it looked like I was walking with a limp. I always said, “No, I am fine,” and brushed it off. After a while, … Read more of "Living with FSHD – My journey to a diagnosis" »