The FSH Society launches Walk & Roll to Cure FSHD, a nationwide event to advocate for public awareness and funding to support the FSH Society’s work to find a cure for facioscapulohumeral muscular dystrophy (FSHD).
The FSH Society’s mission is to accelerate the development of therapies while empowering individuals affected by FSHD.
“Our goal is to deliver a treatment or cure to our families by the year 2025,” declares Mark Stone, president and CEO of the FSH Society, in a media release.
FSHD is among the most prevalent of the nine primary types of muscular dystrophy affecting adults and children. The genetic disorder is estimated to affect 870,000 individuals worldwide and causes progressive weakness, typically in the face, shoulder blade, arms, legs, and torso, but may affect almost any skeletal muscle in the body. There is currently no treatment or cure, and approximately one-quarter of patients become dependent on wheelchairs, the release explains.
“Our event is called the ‘Walk & Roll’ because FSHD can affect individuals very differently,” explains Beth Johnston, chief community development officer at the FSH Society. “Some people may have weakness in the upper body but can still walk and run. Others are dependent on scooters or wheelchairs. Our event is inclusive of everyone.”
The Walk & Roll to Cure FSHD will take place in September and October this year in five locations across the United States with additional sites being added in 2019.
“The Walk & Roll is first and foremost a fundraiser, generating critical funds to support the search for treatments and a cure, but it is also about so much more,” Johnston shares.
“On event day, for a few hours, we all join together as one. Living with FSHD can be a lonely road. At the Walk & Roll, we realize no one makes the journey alone.”
[Source(s): The FSH Society, PRWeb]