#United States #Randolph #FSH Society #muscle dystrophy #Walk & Roll

Communities Rally for a Cure: The Walk & Roll to Cure FSHD

This fall, families, friends, and advocates are coming together across the United States and Canada for an impactful cause—the Walk & Roll to Cure FSHD. Scheduled for dates in September and October, this series of events represents a collective effort to raise both funds and awareness for those affected by facioscapulohumeral muscular dystrophy (FSHD), a chronic and often debilitating condition impacting approximately 870,000 individuals globally.

Understanding FSHD

FSHD is recognized as one of the most prevalent forms of muscular dystrophy. It commonly triggers muscle weakness that typically begins affecting the face, shoulders, and arms, resulting in a gradual decline in mobility and independence. Currently, there are no FDA-approved treatments for FSHD, though ongoing clinical trials suggest a more hopeful horizon for those living with the disease.

Growth of the Movement

Since its inception in 2018, the Walk & Roll to Cure FSHD has expanded from a mere five events to over two dozen locations throughout North America. This growth illustrates a powerful commitment from communities and volunteers who are determined to support research initiatives and programs for families impacted by FSHD. Additionally, a virtual option is available, allowing individuals from anywhere to partake.

The Walk & Roll events have collectively raised more than $4.5 million to date, reinforcing the belief that community support plays a critical role in advancing research and finding solutions to combat FSHD.

Voices from Leaders in the Community

Jess Wright, the Director of National Fundraising Events for the FSHD Society, reflects on the influential role of volunteers. "This is my first Walk & Roll season, and I'm so inspired by the dedication of our volunteer leaders. They make the events possible through hard work and passion, uniting the FSHD community to raise awareness and aim for a cure." This sentiment echoes the collective strength of the participants, who have made these initiatives successful.

Purposeful Fundraising Initiatives

The funds raised through the Walk & Roll to Cure FSHD support critical initiatives, including the BetterLife platform—a digital resource designed to aid individuals in tracking their symptoms while also contributing valuable data to ongoing research. Additionally, the FSHD Navigator provides tailored support and guidance to those grappling with the complexities of FSHD, ensuring no one faces this challenge in isolation.

How to Get Involved

If you wish to contribute to this cause, whether through participation, donation, or spreading the word, you can find more information at FSHDSociety.org/WalkRoll. Every step taken at these events is a step closer to improving lives and finding solutions for those impacted by this disease.

About the FSHD Society

The FSHD Society stands as the world’s largest organization dedicated to the research and advocacy for those living with FSHD. With over 34 years of history, the society has focused on making significant strides in research and treatment options, aiming to alleviate the pain, disability, and hardship experienced by patients. They embody a mission: “As long as we are here, no patient need ever face this disease alone.”

Join the Movement

This fall, make a difference by participating in the Walk & Roll to Cure FSHD. Your involvement can help raise essential funds for crucial research, promote awareness of FSHD, and strengthen the community of those affected by this disease. Together, let's take strides towards a future without FSHD.