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!” »

FSHD Connect pre-conference workshop: A Mindful Way through FSHD

Flamingo Las Vegas, Carson City ballrooom Saturday, June 9, 2018 9:30-11:00 AM PST An experiential workshop for patients, family members, and friends for managing stress, illness, and disability. This is being offered as a pre-conference activity of the 2018 FSHD Connect. If you wish to attend, RSVP to Robyn O’Leary at Thank you! You … Read more of “FSHD Connect pre-conference workshop: A Mindful Way through FSHD” »

Webinar: Psychological interventions to improve well-being in muscle diseases

Note: The video will be posted only until May 31, 2018. Download Chris Graham’s Slide Deck. In this talk, focusing mostly on his group’s work in muscle disorders, Chris Graham, PhD, DPsychol, describes some of the findings from studies looking at what coping methods seem to be beneficial for well-being. He then describes some psychological … Read more of “Webinar: Psychological interventions to improve well-being in muscle diseases” »

Why have an annual check-up?

Many people with FSHD do not see a neuromuscular doctor regularly. Told that there is no treatment, they wonder, “What’s the point?” In this video, Jeffrey Statland MD explains why a yearly visit is important. First, the doctor can check to make sure symptoms have not gotten significantly worse since the last visit. With a … Read more of “Why have an annual check-up?” »

The Physiatrist’s role in managing FSH muscular dystrophy

Many of us have never heard of this field of medicine, but physiatrists are a very important resource for FSHD patients. In this video, Dr. Susan Keeshin of Shirley Ryan Ability Lab in Chicago, one of the nation’s leading rehabilitation center, introduces the field of physiatry for FSH muscular dystrophy patients. Dr. Keeshin says that … Read more of “The Physiatrist’s role in managing FSH muscular dystrophy” »