FSH Society Holding ‘Walk & Roll’ Event in Pacific Northwest to Raise Funds, Awareness for FSHD

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by Janet Stewart, MSc |

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FSH Society fundraiser

Duchenne boys gather for an Enlace event in the Mexican city of Chihuahua. (Photo courtesy of Enlace)

The Pacific Northwest chapter of the FSH Society is holding its first-ever “Walk & Roll to Cure FSHD” event Sept. 22 in Puyallup, Washington, a small city about 35 miles south of Seattle.

FSH Society holds these events around the U.S., with the goal of raising funds for its work as the world’s largest research-focused patient advocacy organization for facioscapulohumeral muscular dystrophy (FSHD) and to increase public awareness about the disease.

“Our event is called the ‘Walk & Roll’ because FSHD can affect individuals very differently,” Nancy Payton, who is a member of the board of directors for FSH Society and the volunteer leader of the Pacific Northwest Walk & Roll, said in a press release. “Some people may have weakness in the upper body but can still walk and run. Others require a scooter or wheelchair to get around. Our event is inclusive of everyone.”

The walk is about 5 km and winds along paved trails through forested areas and around Bradley Lake in Pullyap. It begins at 9 a.m. Sept. 22, with check-in and registration starting at 8 a.m.

FSHD is among the most common of the nine main types of muscular dystrophy in adults and children. Experts estimate that the disease affects about 870,000 people worldwide. It causes progressive weakness, most often in the face, arms, legs, shoulder blades, and torso. There is no treatment or cure yet, and about one-quarter of patients eventually become dependent on wheelchairs.

“Our goal is to deliver a treatment or cure to our families by the year 2025,” said Mark Stone, FSH Society’s president and CEO.

To this end, the organization has launched a new initiative — FSHD Therapeutics — to accelerate research on treatments for FSHD.

Payton’s own son has been diagnosed with FSHD. She said she has learned that “there may not be a lot of doctors who are aware of this type of muscular dystrophy,” and feels she must “educate anyone who will listen about FSHD” to help find a treatment or cure for it.

“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,” Payton said. “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.”

Sponsors as of now include Jones Covey Group, Inc, #CureFSHD, Happy Donuts, Zanpa Sea Glass Jewelry, Dr. Carl Knox, Humana, Smile Right Orthodontics, East Main Vision Clinic, Sportsman’s Warehouse, The Ram, Home Depot, and Wanna Cupcake.

Residents of Puyallup and all of the Pacific Northwest are invited to join the Walk & Roll. More information can be found here.