FDA Patient Listening Session: Upper Body Mobility

Most think of mobility as synonymous with a person’s ability or inability to walk.

However, an overwhelming majority (96% according to multiple studies) of those with FSHD suffer a loss of upper-body mobility, characterized by weakness in the upper arms, shoulders, and trunk. This facet of the disease has an outsized impact on a person’s ability to perform tasks of daily living and maintain their independence.

On August 23rd, 2024, the FSHD community helped the FDA understand this aspect of living with FSHD. The people who bravely shared their experiences were unanimous in expressing that FSHD is a truly relentless disease, and the need for a treatment is urgent. Read more in the report below.