The FSHD Society, the world’s largest research-focused patient advocacy organization for facioscapulohumeral muscular dystrophy (FSHD), announced that it will hold a slew of virtual Walk & Roll to Cure FSHD events this September 12. The online events will take the place of dozens of in-person gatherings that had been planned for this summer and fall.
“When our signature Walk & Roll to Cure FSHD was launched in 2018, a $105,000 fundraising goal felt ambitious,” recalled the Society’s marketing director, Leigh Reynolds. “One year later, we welcomed thousands of participants and raised nearly half a million dollars.” These past events took place in public parks, but with the COVID-19 pandemic, “social distancing and public safety guidelines threatened to derail our progress,” said Reynolds.
Undeterred, the Society’s volunteer Walk & Roll leaders from across the country decided to transition the in-person event into a virtual event that will be celebrated nationwide on September 12. Supporters across the U.S. (and beyond) can join any of the 24 local Walk & Rolls advocating for public awareness and funding to support the Society’s work. People who aren’t close to a local event can sign up for the National Virtual Walk & Roll. Collectively, the 2020 Walk & Roll to Cure FSHD has set a goal of raising a half million dollars for programs in research and patient support.
To create the feel of a live event and foster a sense of community during the virtual Walk & Roll, the FSHD Society will stream its live radio show on September 12 over Facebook. Celebrity guests, researchers, doctors, Walk & Roll leaders, and participants will call in to voice their support and share their exploits with radio show host Tim Hollenback. Max Adler, actor and former Glee star, has agreed to serve as national ambassador for the event.
The funds raised by the virtual Walk & Roll will be invested in accelerating 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,” announced the Society’s President and CEO, Mark Stone.
“We need a cure, and I am passionate about being a part of finding it in any way I can,” said Meredith Huml, FSHD Society North Carolina Chapter Director and Walk Leader. 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 Reynolds. “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.”
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 nearly one million individuals worldwide. It 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.