Today, The FSH Society, the world’s largest research-focused patient advocacy organization for facioscapulohumeral muscular dystrophy (FSHD), announced that it has established its first-ever nationwide signature event, the Walk & Roll to Cure… Read More »
FSH Society Launches Nationwide Signature Walk & Roll Event
Spotlight: Skylar Conover
Ms. Wheelchair USA 2015-2016 By Nicky Williams Dexter [box] A message from Nicky about the Spotlight series: “Feeling connected to others living with FSHD has been a blessing to me… Read More »
Mid-Atlantic FSHD Family Day registration is open
The preliminary agenda and registration are now available for our first Mid-Atlantic FSHD Family Day Conference. It will be held in Baltimore, MD. Co-organized with Kathryn Wagner, MD PhD, and… Read More »
$1.2 Million MDA grant awarded to FSHD Clinical Trial Research Network
When the FSH Society made its initial grant award in 2016 to help establish the nationwide FSHD Clinical Trial Research Network (CTRN), we expected the network would be able to… Read More »
Webinar with Doris Leung, MD PhD, on MRI insights into FSH muscular dystrophy
Here’s the recording of our FSH Society webinar on August 1, 2018. Dr. Leung is a neurologist at Kennedy Krieger Institute Center for Genetic Muscle Disorders and an assistant professor in… Read More »