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 »
The Physiatrist’s role in managing FSH muscular dystrophy
Job opening: Postdoctoral researcher for Sverdrup lab
Fran Sverdrup, PhD, at the Saint Louis University School of Medicine is recruiting a qualified scientist for the position of POSTDOCTORAL FELLOW in Muscular Dystrophy Drug Discovery. OBJECTIVES: The Postdoctoral Fellow will be part of a team focused on target identification and validation in facioscapulohumeral muscular dystrophy (FSHD). He/she will apply expertise in cell and molecular biology to… Read More »
Win a day of self-care with Hollywood star Debby Ryan!
We’re excited to announce that YOU could join Debby Ryan for a self-care day in Los Angeles! Flights and hotel are included, plus donations to win benefit our work here at the FSH Society! You can buy chances to win this once-in-a-lifetime adventure for you and a lucky friend here. Debby Ryan is one of… Read More »
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 »
Tips for getting your insurer to approve genetic testing
We hear often from patients and families who are having difficulty getting an insurer to pay for genetic testing of FSHD. It is our impression that the payors are denying claims based on incorrect assumptions about the medical benefits of genetic diagnosis, or outdated information about the heritability of a genetic disease that can cause… Read More »