23rd Annual Southwest Florida PSP Support Group Awareness & Memorial Walk Honors Cindy MacDonald and Keeps the Heart

Apr 13, 2026 Oscar Sullivan

275 attendees wearing golden yellow shirts rose to their feet as the family of Cindy MacDonald accepted the inaugural Cindy MacDonald Outstanding Community Leadership Award. Some had walked beside her for years. Others were here for the first time, drawn by something she built long before they knew her name. To understand what this moment meant at the 23rd Annual Southwest Florida PSP Support Group Awareness and Memorial Walk, you have to go back to the end of last year's walk.

As CurePSP CEO Kristophe Diaz was stepping into his car, filled with a familiar mix of heaviness and gratitude, he caught Cindy one last time. He told her the day had been phenomenal.

"It was, Kristophe," Cindy said smiling. "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.

That promise was kept this year at Mackle Park, where a wash of golden yellow packed the open-air pavilion next to the lake. The sun beamed down as a breeze cut across the water, people settling into their seats, embracing old friends and meeting new ones, many wearing special ribbons in Cindy's honor. But there was no radiant force moving through the crowd the way Cindy always had, pulling people in and making sure every family felt seen. Instead, people found each other on their own.

Gulf Coast News meteorologist Jason Dunning returned for his fourth straight year. Cindy had reached out to him years ago, and from the moment they met, he said, it felt like they had known each other their entire lives. Her passion was contagious, and inspired him to use his platform on air to spread awareness about these diseases.

“Rain or shine, and as a meteorologist, I don’t say that lately,” Jason said to the crowd. “Cindy showed up every single time, determined that PSP would be seen, understood and never ignored.”

He closed by calling her legacy “forward motion,” and then said the only thing left to say: “Let’s walk.”

Attendees made their way around the lake, passing a record number of memorial signs lining the path, each one dedicated to a loved one and featuring cherished photos. They would never forget those faces, and these steps were their way of holding those memories and still moving forward. Lois, who lost her husband to PSP eight years ago and has spent years raising awareness through her annual music event in his honor, traveled from West Palm Beach. “It just means a lot to me,” she said. Others came from different states to walk the same path. A family from Wisconsin, there for their brother-in-law Donald: “My heart is full right now, and I'm feeling him smiling on from above.” A woman from Kentucky, who lost her mom in 2022, spoke about the isolation that comes with these diseases. “A lot of times people do feel that way. So it's nice.” The Cantor family, who lost Carol to PSP three years ago and have since become deeply involved in the cause. “You realize how we're all connected, and that there really is true hope for the future,” said Marigrace, daughter of Carol.

The walk has already raised over $130,000 and counting. The first $50,000 was matched dollar for dollar thanks to the Mary Jane Semcer Research Legacy Fund and the Linda Ann Phillips Legacy Fund. These funds will support the CurePSP Quality of Life Respite Grant, which provides 100 hours of professional, agency-based in-home care to those living with PSP, CBD or MSA; CurePSP's Biomarker Accelerator Program, funding the science that moves PSP diagnostics from promising leads to clinical applications; and the continued work of Dr. Sally Temple at the Neural Stem Cell Institute (NSCI), which is building disease models from cultures, “neural organoids,” to test treatments and therapeutics.

Dr. Temple, who had gotten to know Cindy well after several years of attendance, described the strangeness of a walk without her: “I keep thinking I see her. We really miss her, but I truly believe we're doing what she wanted.” She credited the passion of the CurePSP community for allowing them to push through the “valley of death,” the stretch between a promising idea and an actual clinical trial — where most research stalls, not for lack of science, but lack of funding. After five years of CurePSP investment, Dr. Temple had new updates to share.

Dr. David Butler, who invented the core technology, has designed a specialized antibody molecule that enters the brain, binds to the toxic tau protein responsible for PSP, and degrades it entirely. The goal is a one-and-done therapy that stops disease progression and potentially restores some functionality. He recently applied for a national NIH grant, open to anyone in the country and notoriously difficult to obtain. He received a score of 1, the highest possible score, and Dr. Temple said that he’s the first person she knows to get a 1. A third-party safety trial, run in Belgium as required by the FDA, confirmed the drug and approach appeared safe. Animal testing on mice begins this month. Specialized mice carrying the human tau protein will receive the drug via a surgery used in humans. Dr. Butler was hitting the correct area more than 90% of the time by the end of last year, and Dr. Temple is confident they are ready. “Fingers crossed.”

In Cindy’s honor, the Cindy MacDonald Tribute Fund has been established to ensure that no family is kept from attending the walk for financial reasons. “I want people to come even if they can't afford it,” she once said.

Attendees came from over twenty-two states, drawn by the belief that being together in person mattered in ways that nothing else could replace. They return because they share both a grief and a hope, and because Cindy proved that unwavering compassion can make the future feel less lonely.