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With a goal of finding a cure to facioscapulohumeral muscular dystrophy (FSHD) by 2025, the FSHD Society’s third annual Walk & Roll To Cure FSHD will take place virtually around the country on Sept. 12.
Participants can sign up for one of 24 informal local events in communities around the U.S., from the Pacific Northwest to Southwest Florida; anyone without a local Walk & Roll can sign up for the National Virtual Walk & Roll.
“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,” said Leigh Reynolds, Marketing Director for the FSHD Society. “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.”
To help foster that community feel, the society will broadcast a live radio show, hosted by Tim Hollenback, live on Facebook on Sept. 12. Celebrity guests, researchers, doctors, Walk & Roll leaders, and participants will call in to voice their support and share their stories.
Former Glee actor Max Adler will serve as national ambassador for the event.
In 2019, the Walk & Roll included over 1,300 participants at 11 locations around the country, raising nearly $500,000 from nearly 2,500 donors. This year, the society’s goal is to exceed that half-million-dollar mark.
“We need a cure, and I am passionate about being a part of finding it in any way I can,” said Meredith Huml, FSHD Society North Carolina Chapter Director and Walk Leader, who was diagnosed with FSHD as a young teen. Her younger brother was diagnosed more recently but his symptoms have progressed more rapidly, and he is now in a wheelchair.
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 nearly one million individuals worldwide, causing 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 known treatment or cure to FSHD; approximately one-quarter of patients become dependent on wheelchairs.