People across North America are taking part in the Society’s sixth 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. On the weekend of September 23-24 alone, there will be 10 Walk & Rolls spanning the U.S., from Washington DC to San Francisco, and Minneapolis to Dallas.
“The livestream celebration is an important aspect of the Walk & Roll. As FSHD is a rare disease, many who are impacted feel isolated and alone,” says Beth Johnson, chief community engagement officer with the FSHD Society. “Each local event may be modest, with dozens to a couple hundred people, but when we come together in real time through the livestream, those miles separating us melt away and people feel truly connected to something so much larger – to thousands who are raising their voices together, committed to making lives better for everyone with FSHD.”
The livestream celebration will also include special guest appearances from the cast and director of “Good Bad Things,” an upcoming film starring Danny Kurtzman, an actor with FSHD. Along with Kurtzman, the film’s director, Shane Stanger, and Max Adler, supporting actor, will drop in for interviews with Tim Hollenback. Adler also serves as the International Ambassador for the Walk & Roll. He is best known for his role in the hit series Glee. He has been seen more recently in such films as The Trial of the Chicago Seven, as well as on television shows such as NCIS and Criminal Minds.
For Adler, his participation in the Walk & Roll 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,” he said.
This year’s Walk & Roll aims to raise $1 million dollars to support research into treatments and a cure for FSHD, as well as a wide variety of patient support and education services. The Lai Family has pledged to match all donations up to a total of $250,000. Expenses for the event are offset by national sponsors, Optum, Fulcrum Therapeutics, and Avidity Biosciences, as well as local community sponsors.
“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 Johnston. “This disease stops for no one, and neither will we.”
Supporters across North America can 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 23rd.
About the FSHD Society
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 32 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.
Media Contact
June Kinoshita, FSHD Society, 781-301-6049, [email protected], https://www.fshdsociety.org/
SOURCE FSHD Society
