FSH Society Launches Nationwide Signature Event for Facioscapulohumeral Muscular Dystrophy

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Walk & Roll to Cure FSHD will raise public awareness and funds for this rare disease

Walk & Roll logo
Living with FSHD can be a lonely road. At the Walk & Roll, we realize no one makes the journey alone.

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 FSHD. Under the unified brand, supporters anywhere in the U.S. (and beyond) can organize a “walk & roll” event to advocate for public awareness and funding to support the Society’s work.

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,” declared the Society’s President and CEO, Mark Stone.

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.

“Our event is called the ‘Walk & Roll’ because FSHD can affect individuals very differently,” explained 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 around the U.S., with additional sites being added in 2019. The five inaugural events will occur at the following dates and locations:

“Our five brave Walk & Roll ‘pioneer’ volunteers have been taking part in monthly training sessions, testing fundraising materials, reviewing and learning the software platform, and offering valuable feedback and insight as they prepare to host their events,” said Johnston. “Their participation and leadership are paving the way for a nationwide program in the future, while generating important revenue today. With weeks to go until our first event, we are on track to blow our inaugural fundraising goal out of the water!”

“We need a cure, and I am passionate about being a part of finding it in any way I can,” said Meredith Huml, who is co-organizing the Cary, North Carolina Walk & Roll with her father, Ray Huml. She 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.

“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 Johnston. “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 learn more, visit https://www.fshsociety.org/connect-locally/walk-roll-to-cure-fshd/

About the FSH Society
The FSH Society is the world’s largest research-focused patient organization for facioscapulohumeral muscular dystrophy (FSHD), one of the most prevalent forms of muscular dystrophy. We have catalyzed major advancements and are accelerating the development of treatments and a cure to end the pain, disability, and suffering endured by one million people worldwide who live with FSHD. The FSH Society has transformed the landscape for FSHD research, and is committed to making sure that no one faces this disease alone. The Society offers a community of support, news, and information through its website.

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June Kinoshita
FSH Society
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