Volunteers Gather Online to Celebrate Nationwide Effort to End FSHD


Walk & Roll to Cure FSHD logo and several images of participants

2022 Walk & Roll to Cure FSHD

The livestream celebration is an important aspect of the event. As FSHD is a rare disease, many that are impacted often feel isolated and alone. With the live event on Facebook, those miles between us fade away and people feel less alone.

The FSHD Society announces its annual Walk & Roll to Cure FSHD Livestream Celebration. The Walk & Roll is the largest – and only – international campaign focused solely on raising funds and awareness for facioscapulohumeral muscular dystrophy (FSHD), a debilitating and rare form of muscular dystrophy that affects nearly one million men, women, and children around the world.

Individuals from across North America are taking part in the Society’s fifth annual Walk & Roll to Cure FSHD, the organization’s signature event. In-person events have been organized by volunteers in cities across the US and Canada throughout September and October. In one online event, all the events will come together for a 3-hour livestream celebration on Facebook@FSHDSociety on Saturday, September 17, 8:30-11:30am Central.

“The livestream celebration is an important aspect of the event. As FSHD is a rare disease, many that are impacted often feel isolated and alone. When we come together for this live event on Facebook, those miles between us fade away and people feel connected to something so much larger than the event happening right in front of them and they feel less alone,” says Leigh Reynolds, chief program strategist with the FSHD Society.

Back as the National Ambassador for the Walk & Roll is actor, producer, and writer, Max Adler. Adler may be best known for his role in Glee but has been seen recently in such films as The Trial of the Chicago Seven, as well as a long list of appearances on noted television series. For Adler, his participation is deeply personal. “I watched my mom and Grandma struggle with this disease, and I don’t want that to happen to anyone, anywhere, ever again,” said Adler.

“FSHD is relentless. It’s a progressive disease that robs you of your smile, your ability to walk or perform simple, every-day tasks that most people take for granted,” said Beth Johnston, the Society’s chief community development officer. “This disease stops for no one, and neither will we.”

This year’s Walk & Roll aims to raise $1 million dollars to support research into treatments and a cure, as well as a wide variety of patient support and education services. Expenses for the event were offset by national sponsors, Optum, AMRA, Dyne Therapeutics, and Avidity Biosciences, as well as a host of local community sponsors.

Supporters across North America can still register for and donate to the FSHD Society’s Walk & Roll event by visiting FSHDSociety.org/Walk-Roll. Everyone is invited to tune in to the FSHD Society Walk & Roll Facebook Live Celebration on September 17. Event participants from coast to coast will call in and there will be a special appearance by Max Adler.

The FSHD Society is the world’s largest research-focused patient advocacy organization for facioscapulohumeral muscular dystrophy (FSHD), one of the most prevalent forms of MD. Over the past 31 years, the organization has catalyzed major advancements and worked to accelerate 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 FSHD 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 at https://www.fshsociety.org.

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