The 21st Southwest Florida PSP Support Group Awareness and Memorial Walk Blends Tradition With Fresh Faces for Renewed Optimism

Mar 20, 2024 Oscar Sullivan

It was a breezy and pleasant Saturday morning at Mackle Park when the Southwest Florida PSP Support Group and volunteers welcomed attendees for the 21st edition of the Awareness and Memorial Walk. Marine blue t-shirts were handed out until none remained, leaving a sea of supporters seated at tables listening to Cindy MacDonald, support group facilitator and long-time walk organizer, kick off the proceedings. The shirts matched the serene southern Florida landscape, symbolizing a community of thoughtful members ready to offer a shoulder as well as hope for the future.

“They’re around people who understand, and they’re just happy to come out and enjoy the gorgeous day, the weather, have some fun and some seriousness recognizing their loved ones around the lake,” MacDonald said. “It’s just good shared community time among members.”

Following the opening remarks, Catherine Boltz, a support group member and donor who has PSP, led the attendees alongside her dog Kirby out and around the lake at Mackle Park. The path was lined with old and new signs dedicated to loved ones affected by these diseases. There was a sign every couple feet and onlookers passing through the park could be seen pointing at the tributes and talking about these diseases. Attendees stopped and posed for photos celebrating their resilient loved ones.

PSP, CBD and MSA are rapidly changing diseases, yet the walk has persisted thanks to members who return year after year. In addition to Cindy, the Southwest Florida Support Group includes many members who offer unconditional support. Frank Semcer hosted a lively meet and greet on Friday night with animated discussions between patients, care partners and researchers. Jack Phillips was in attendance both days after recently being named CurePSP’s latest Board Chair, in addition to Marilyn Steiner and several other longtime dedicated group members.

This year’s walk was a significant one for Phillips, whose wife Linda passed away in August from PSP and who had attended the previous two years. He considers the Board Chair position a tribute to Linda and feels energized by the recent progress in research and partnerships. He reflected on the landscape three years ago when Linda was diagnosed, noting only two clinical trials that had failed, compared to today, where multiple clinical trials are preparing to launch and recruiting PSP patients.

“I’m really happy, there’s a big acceleration with the work that CurePSP is doing,” Phillips said. “There’s a lot going on that I think is going to bear fruit because these diseases are interlinked.”

The walk has made cutting-edge research possible, and for a third straight year will fund the work of Dr. Sally Temple and her team of dedicated scientists at the Neural Stem Cell Institute (NSCI) in Rensselaer, NY. Dr. Temple and Dr. David Butler were in attendance for the meet and greet and walk, showing appreciation for the community and updating them on their project. The scientists are pursuing a unique gene therapy approach using “intrabodies,” and are proud to continue making progress.

“We are excited to finally, thanks to this event, do the experiments that we need in order to go to the FDA and talk to them about what we need to enter the clinic,” Dr. Temple said. “It’s very directed research in mice models that people have generated for this purpose.”

On Friday morning, during the weather report on NBC2, meteorologist Jason Dunning told Southwest Florida residents about a walk that he would be attending the next day in Mackle Park. Support group members and Cindy in particular were thrilled with the feature, as this sort of awareness is crucial in advancing support and research. Dunning, a Florida native, gravitates towards the community’s generosity that quickly makes one feel welcome. He recognizes the need for increased awareness, which starts with sharing information with one’s peers.

“When I was telling my coworkers about the event that I was attending they were like, ‘what is PSP?’” Dunning said. “Whatever I can do to help get the word out I’m happy to do." 

The sea of blue shirts walking together came from all over the country. Many said that they attended because there was nothing like this in their own states, a testament to how many dedicated supporters exist all over the world, waiting for an opportunity to channel their hope for a brighter future into action. For a tight-knit support group that has spent so many years promoting awareness for these rare diseases, it appears that the advancements are starting to match their outsized hearts.