The FSHD Society, a 501c3 nonprofit patient advocacy organization, has announced that Max Adler, an actor best known for his roles on the hit series “Glee,” available for streaming on Netflix, and “Switched at Birth”, is serving as this year’s national ambassador for the organization’s signature fundraiser, Walk & Roll to Cure FSHD, taking place September 12.
There are currently no treatments available to people with FSHD and with Max Adler’s help the FSHD Society is hoping to raise $500,000 to be put towards research and drug development with the goal of having an approved therapy by 2025.
While Covid-19 forced the FSHD Society to shift their annual Walk & Roll to a virtual format, Adler enthusiastically accepted the challenge of raising awareness and funds despite difficult landscape because of his personal connection to FSHD, one of the most prevalent forms of Muscular Dystrophy. FSHD attacks the muscles in many parts of the body, often affecting people’s ability to smile, lift objects, and walk.
“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. “My grandmother, for example, had a motorized scooter attached to the back of her car, and every time she parked, I remember having to assist her with being able to get out of the driver’s seat, which was no easy task, and helping her walk ever so slowly to the back of the car to get the scooter, holding onto the car so she wouldn’t fall. The hot, hot, burning car in the Arizona sun. It was agonizing to see.”
“My mother was also diagnosed with FSHD, as the disease can be passed genetically,” Adler explains. “Simple things like walking from her bedroom to the living room required a rolling stool for her to lean on because she could no longer walk upright. Other things that usually don’t require much effort or thought such as grabbing a coffee mug from a shelf above your head became the most arduous challenges for her, bringing tears to her eyes, which of course then brought them to mine.”
“The money we’re raising by participating in this Walk & Roll is supporting programs and funding research that will directly impact patients and their families living with FSHD,” Adler said. “Every dollar raised brings us closer to a treatment…I hear it could be as soon as 2025.”
As national ambassador, Adler is inviting his fans to join him in fundraising for FSHD research or by raising awareness through posting to social media with #curefshd #nationalwalkroll. Walk & Roll participants will have an opportunity to win a special “Moment with Max.” Winners in each category below will be invited to a live Facebook event on September 12 to chat, one-on-one, with Adler.
Highest Fundraiser – the walker/roller who raises the most money on their personal page (whether participating as an individual or on a team);
Captain of the Largest Team – the team captain that recruits the most active team members and has the highest number of their team members raise any amount;
Social Butterfly – largest social footprint, tracked by using #NationalFSHDWalkRoll, #CureFSHD, and a local event hashtag.
Supporters across the U.S. (and beyond) can register for the FSHD Society National Virtual Walk & Roll by visiting FSHDSociety.org/walk-Roll. Supporters can also tune in on the FSHD Society Facebook Live telethon on September 12 to watch special appearances with Max Adler, patients and leading researchers.