CurePSP and the Southwest Florida PSP Support Group Ensure That No One Walks Alone

“If you build it, they will come,” says Cindy MacDonald, Southwest Florida PSP Support Group facilitator and long-time Awareness and Memorial Walk organizer. The motto was passed down to Cindy from the Walk’s founder, Joan Reiffler, and has held true for twenty-two years and counting. As Marco Island and the Southwest Florida PSP Support Group prepare to welcome attendees to the longest running PSP event in the country, they take pride in the vast and compassionate network that the event represents. For a disease that can feel so isolating, the Annual Southwest Florida PSP Support Group Awareness and Memorial Walk is a testament to the rich community of patients, care partners, advocates and researchers who have made tangible gains in resources, research and care for those affected.

After attracting around forty people in its first couple years, the Walk now consistently draws in almost 200 attendees, gathering under the airnasium at Mackle Park. The park offers a serene and pleasant atmosphere for an event that has grown into a vibrant community celebration, offering something for everyone. Attendees can look forward to a raffle with numerous prizes to local businesses and notable brands, as well as a silent auction filled with unique items and a catered lunch that brings people together to share stories and connect. Live music by local resident Kathy O. adds to the festive atmosphere, creating a day filled with joy, camaraderie and purpose.

The Walk has raised over $1 million since its inception, funding innovative research and respite care for families. CurePSP, the largest nonprofit dedicated to raising awareness, building community, improving care and finding a cure for PSP, CBD and MSA, ensures that these funds are allocated in a way that maximizes their impact. For many years, these rare diseases had been considered too mysterious to garner mainstream attention, but more recently awareness and fundraising has grown significantly.

In March 2023, the PSP, CBD and MSA communities received unexpected news when they learned that the National Plan to End Parkinson’s Act had been introduced to Congress. This was the first-ever federal legislation dedicated to ending Parkinson’s disease and related conditions including PSP, CBD and MSA, signaling potentially life-changing interest and investment in these diseases. Later that year, Virginia Congresswoman Jennifer Wexton announced her PSP diagnosis, describing it as “Parkinson’s on steroids.” Despite doing everything she could to fight the condition, she said that she would be retiring at the end of her term. This began a whirlwind year-plus of tireless advocacy and awareness from Rep. Wexton that included a powerful and informative PSP Awareness Month campaign, which ultimately led to Congress and the Senate passing the bill. In July 2024, former President Joe Biden signed it into law under the new title, “The Dr. Emmanuel Bilirakis and Honorable Jennifer Wexton National Plan to End Parkinson’s Act.”

Capitalizing on growing awareness, CurePSP invested a record $1.2 million in 2024 to advance research, focusing on critical areas like biomarkers and disease progression. These findings will be shared globally to accelerate breakthroughs. Funds from the Awareness and Memorial Walk support Dr. Sally Temple’s innovative work with neural organoids at the Neural Stem Cell Institute, as well as the CurePSP Quality of Life Respite Grant and the new Biomarker Accelerator program, which bridges lab discoveries to real-world applications. Increased awareness among doctors, researchers and the public is vital, as it drives attention and investment from key stakeholders, bringing us closer to a cure.

Grassroots efforts such as the Awareness and Memorial Walk are critical for pushing these rare diseases into the mainstream. Numerous volunteer events happen across the country every year, and in 2023 CurePSP launched “Team CurePSP,” a collective of supporters who raise funds and compete in races and marathons across the world to improve the lives of those affected. Any member of the CurePSP community has seen the tangible difference that their efforts have made. As awareness continues to grow, those at the Awareness and Memorial Walk and CurePSP supporters across the world are building a future that is more inclusive for those affected. Just as Cindy MacDonald and Joan Reiffler envisioned, this progress is a testament to the power of collective action, proving that even in the face of rare and isolating diseases, no one needs to walk alone.

Register here for the 22nd Annual Southwest Florida PSP Support Group Awareness and Memorial Walk