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” »

2018 FSHD Connect Conference registration is now open!

Our community’s premier networking event for immersive learning and community building Our biennial FSHD Connect Conference is an amazing opportunity to meet hundreds of patients and families, as our leading thinkers share the latest in medical management of FSHD and exciting advances toward treatments. Breakout sessions will cover how to cope with practical and emotional … Read more of “2018 FSHD Connect Conference registration is now open!” »

Ask the Physical Therapist series

Our blog series of Q&As with physical therapist Julie Hershberg contain so many useful tips that we thought it would be helpful to index them all in one place. Bookmark this post so you’ll have it at your fingertips! Inversion tables, trigger points, and chronic pain management Car Accidents and FSHD Zero-Gravity Treadmills, Strength Training, … Read more of “Ask the Physical Therapist series” »

¡El folleto “About FSHD” ya está disponible en español!

Estamos muy contentos de anunciar que About FSHD, nuestro folleto esencial para todos los pacientes, familias, proveedores de atención primaria y otros, ha sido traducido al español. Damos las gracias a Manuel Gómez y al Dr. Alberto Rosa por su generosa ayuda. El folleto está disponible en formato descargable aquí.  

Hot off the press: FSH Watch

The latest issue of FSH Watch is here! Highlights: Clinical Trial Research Network receives major NIH award World FSHD Day 2017 FSHD Family Day Conference in Columbus, Ohio Bone health and FSHD FSH Society’s congressional testimony Why I donated tissue Ask the physical therapist (part 3) How can I use a planned gift to support … Read more of “Hot off the press: FSH Watch” »

Ohio FSHD Family Day Conference

Strengthening our network in the Midwest The FSHD Family Day Conference, hosted by Nationwide Children’s Hospital and the FSH Society on June 11, 2017, drew about 70 patients, families, researchers, and clinicians to Columbus, Ohio. The half-day meeting provided an opportunity for two of the nation’s leading FSHD research centers to share expertise and research … Read more of “Ohio FSHD Family Day Conference” »