Remembering Cindy MacDonald: The Heart Behind the Nation's Longest-Running PSP Awareness Walk

The CurePSP community has sadly lost one of its staunchest advocates, Cindy MacDonald, the longtime facilitator and organizer of the Southwest Florida PSP Support Group Awareness and Memorial Walk. Over fifteen years Cindy transformed a small gathering into the longest-running PSP event in the country, creating a space where hundreds of families — many now traveling from other states — could find the physical connection and shared understanding that made facing this disease feel less isolating.

A self-described hugger, Cindy embraced anyone who reached out with open arms, guided by the belief that being together in person mattered in ways virtual support never could. "Once you meet her you don't forget her," her sister Terri recalled. She carried forward the motto passed down from the Walk's founder Joan Reifler, “If you build it, they will come,” and for fifteen years she welcomed hundreds of families and transformed how those facing these diseases could find support.

Cindy attended her first Walk in 2005 alongside her late mother, Dorothy, who was living with PSP. They were both shocked to find a group of people who even knew what PSP was — much less organize a fundraiser for it. She later recalled those early years as more like get-togethers, with a light stroll around the parking lot of the Naples Bath & Tennis Club followed by a luncheon and raffle. Inspired by the compassion and understanding she found at the Walk, and driven by the realization that "there was no resources really available to talk to people," Cindy eventually took over organizing duties from Reifler, promising to preserve what made the event special for as long as she was in charge.

The Walk flourished under Cindy's leadership. Attendance grew from 40 to over 260, and the event has raised more than $1 million since its inception. But the true measure of her impact went beyond the numbers and into the families who traveled from 23 states to be a part of a community where they felt seen. Cindy's approach was deeply personal: she resisted automated systems in favor of sitting down every Friday and Saturday to call support group members herself. "Her biggest thing is to have people learn what they can do and what's out there," Terri explained. She was passionate about keeping the event “family-oriented” and “not real commercialized,” insisting on homemade cookies rather than store-bought ones and maintaining the personal touches that made families feel truly welcomed.

“They just want to be around people who get it,” Cindy once explained, “who have gone through it and have something in common with them, no matter where they are.” That understanding drove everything she did. The memorial signs lining the lake, growing to over 70 by her final walk, stood as affirmations that these families’ struggles mattered, and that their loved ones would be remembered by others who got it.

Behind the scenes, Cindy's dedication was tireless. For years, she and her life partner John spent the Friday and Saturday before each walk picking up supplies, and afterward would bring donations home to count by hand. John manned the grill for thirteen years, cooking hot dogs and hamburgers for attendees. Cindy also founded the Southwest Florida PSP Support Group, going door-to-door in Naples to secure donations and spread awareness to people who had never heard of the disease.

At her final walk, CurePSP Board Chair Jack Phillips took the stage to honor Cindy with an award for her fifteen years of dedication. He recognized her as “a voice of comfort” who consistently checked in on everyone, noting how her thoughtfulness extended to the smallest gestures: the placement of tables, the sandwiches provided, the way she made every family feel valued. Overwhelmed with emotion, Cindy accepted the award, momentarily speechless at the unexpected recognition.

At the end of that day in March 2025, after the last photos and hugs, as people folded chairs and drifted back to their cars, CurePSP CEO Kristophe Diaz caught Cindy one more time. Stepping into his car, full of that familiar mix of gratitude and heaviness that comes from being with so many families carrying so much and still choosing hope, he told her how phenomenal the day had been.

Cindy smiled the way only Cindy could, and then she did what she always did: she gently pulled the moment back to what mattered most. "It was, Kristophe," she said. "But next year, we have to make sure we don't lose the heart. The heart is the most important. It's not about the money. It's about the heart." He promised her they would never lose it. She smiled back, and he drove away. It was the last time he saw her. Just one week later, she was diagnosed with the cancer that would take her life.

For over a decade Cindy MacDonald was the unwavering presence that families could count on, a ray of light who believed in the power of unconditional love to lift people up. She gave people a reason to have hope by proving it was always possible to find a community of support. Cindy was there until the end, a force whose legacy will live on in every family who found belonging in the space she created. Because she built it, they will keep coming.

In her honor, the Cindy MacDonald Tribute Fund has been established to help families attend the Annual Southwest Florida PSP Support Group Awareness and Memorial Walk, ensuring that her legacy of heart continues to bring people together.