Fundraising events across North America bring hope and connection to families impacted by a common form of muscular dystrophy
RANDOLPH, Mass., Sept. 4, 2024 /PRNewswire-PRWeb/ -- Throughout September and October, the FSHD Society is bringing communities together across North America to Walk & Roll for a future free from facioscapulohumeral muscular dystrophy (FSHD), a relentlessly progressive muscle-wasting disease.
FSHD, one of the most common forms of muscular dystrophy, primarily affects the muscles of the face, shoulders, and upper arms but can also impact other parts of the body, leading to significant physical disability and loss of independence. With multiple drugs aimed at treating FSHD currently in clinical trials, there is more hope than ever that a breakthrough is on the horizon.
The FSHD Society's seventh annual Walk & Roll to Cure FSHD is mobilizing thousands of affected individuals, families, and allies across the U.S. and Canada. Since its inception in 2018, the Walk & Roll campaign has grown from just five events to 32 locations across North America, raising over $4.5 million to support crucial research and programs. The Walk & Roll plays an important part in raising awareness and funds to combat FSHD and provides support to those living with it.
"The power of the Walk & Roll to Cure FSHD is so much more than fundraising. It strengthens the community of people impacted by FSHD, empowering them to do something where they may have felt powerless before. The community feeling that is created is something you cannot put a price tag on." says Beth Johnston, Chief Community Engagement Officer at the FSHD Society, whose family also lives with FSHD.
Back as the National Ambassador for the Walk & Roll is actor, producer, and writer, Max Adler, best known for his role in the hit series Glee. Adler has also appeared in recent films such as The Trial of the Chicago Seven and Good Bad Things, a new film starring an actor with FSHD, as well as television shows like NCIS and Criminal Minds.
Adler shared, "A perfect example of the power and love of the FSHD community coming together is this: Recently, I received a message through social media from someone I had never met. They desperately needed a new motorized wheelchair to get around and be the mother they were meant to be but were out of money and options. I immediately reached out to all of my FSHD contacts, and within 48 hours, that person had a brand-new piece of equipment on the way to their house. That is the magic and strength of the love, impact, community effort, and powerful resources that come together when the FSHD Society shines its big bright light on the world. I'm proud to be a part of that through my efforts in the Walk & Roll."
While Walk & Roll events take place throughout September and October, September 21st marks National Walk & Roll Day, a day for communities across North America to unite in support of those affected by FSHD. A special podcast episode of FSHD Straight Talk will feature interviews with volunteer leaders and highlights from Walk & Roll events, showcasing the dedication and resilience of those involved.
Don't wait on the sidelines. Join the movement to cure FSHD. Visit https://www.FSHDSociety.org/Walk-Roll today to register, donate, and be part of the effort that's changing lives. Together, we are paving the way to a brighter future for everyone affected by FSHD.
About the FSHD Society
The FSHD Society is the world's largest research and patient advocacy organization dedicated to facioscapulohumeral muscular dystrophy (FSHD). The Society supports families affected by this disease through programs like BetterLife, which empowers patients with tools to track symptoms and connect with researchers, and FSHD Navigator, a service providing personalized assistance to help navigate the challenges of living with FSHD. For over 30 years, the Society has driven major advancements in research and treatment development, with the mission to end the pain, disability, and suffering of those living with FSHD. "As long as we are here, no patient need ever face this disease alone."
Media Contact
Erin Saxon, FSHD Society, 781-301-6060, [email protected], https://www.fshdsociety.org/
SOURCE FSHD Society
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