All of the events will come together for a three-hour livestream celebration on Facebook@FSHDSociety on Saturday, September 23, 8:30-11:30am Central. “The livestream celebration is an important aspect of the event. As FSHD is a rare disease, many who are impacted often feel isolated and alone,” says Beth Johnson, chief community engagement officer with the FSHD Society. “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.”
Back as the National Ambassador for the Walk & Roll is actor, producer, and writer, Max Adler. Adler 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 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 Johnston. “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. 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.
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. Event participants from coast to coast will call in and there will be a special appearance by Max Adler.
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, 781-301-6649, [email protected], https://www.fshdsociety.org/
SOURCE FSHD Society
