NoSto Defeats MSA: A Community United Against Multiple System Atrophy
NoSto Defeats MSA: A Community United Against Multiple System Atrophy
The NoSto Defeats MSA 5K and Fitness Walk is set to return for its annual event on Saturday, September 21, 2024, at the Wheeler High School cross country course in North Stonington, Connecticut. This event, now in its fourth year, continues to grow in scope and impact, bringing together the community to raise awareness and funds for Multiple System Atrophy (MSA), a rare and devastating neurological disease.
MSA is a relentless condition that slowly robs individuals of control over their bodily functions, one system at a time, while leaving them fully aware of their decline. It is a disease without a cure, and for those diagnosed, the prognosis is grim. But through efforts like the NoSto Defeats MSA event, there is hope—hope for raising awareness, funding research, and supporting those affected by the disease.
The 5K race and Fitness Walk will kick off at 10:00 a.m., offering participants a chance to compete or simply enjoy the newly marked course, thanks to the Eagle Scout project led by Sophie Zichichi. This year’s event promises to be even more inclusive, with additional age categories and medals awarded to the top three finishers in each group. Prior to the main event, a Kids ½ Mile race will start at 9:00 a.m., where young runners can earn trophies for top finishes and medals for all participants.
In addition to the races, there will be free kids' activities throughout the morning, including child care, making the event family-friendly and accessible to all. Local vendors, artisans, crafters, and community groups will also have the opportunity to set up booths, adding to the festive atmosphere and offering attendees a chance to support local businesses and organizations.
The NoSto Defeats MSA event is deeply personal for Emily Knowles, the event organizer, who lost her sister, Victoria Lynn Davis Schneider, to MSA in 2021. Emily shared her story of loss and the determination to make a difference despite the challenges of living six hours away from her sister during her illness. Victoria, a beloved wife, mother, grandmother, and creative spirit, was diagnosed with MSA-C in July 2020 after a long journey of misdiagnoses and uncertainty.
In her sister's memory, Emily has channeled her grief into action, organizing this 5K event to bring attention to a disease that many, including doctors, are unaware of. “When I heard the diagnosis, and I couldn’t be there to help on a daily basis, I had to do something,” Emily explained. Her determination has turned this local race into a beacon of hope, with nearly 100 participants in its first year and growing involvement from the community each year since.
One of the most heartwarming aspects of the event has been the involvement of young people like Sophie Zichichi and Allison, who have made significant contributions through their Eagle Scout and National Honor Society projects, respectively. Their dedication has not only enhanced the event but also inspired others in the community to get involved.
Reflecting on the journey, Emily expressed her gratitude for the support the event has received and the awareness it has raised. “Though I wish I didn’t have to know about MSA, I’m driven to share my knowledge and inspire youth that small actions can make a big difference,” she said.
As the community gears up for the September event, the NoSto Defeats MSA 5K and Fitness Walk stands as a testament to the power of local action in the face of a global challenge. By coming together, North Stonington is not only honoring the memory of those lost to MSA but also making strides toward a future where others may not have to suffer the same fate.
For more information about the event, how to participate, or to learn more about Multiple System Atrophy, visit Defeat MSA. Together, we can make a difference.
