Because Hope Matters

Yellow was the theme of the day as bright, sunny skies greeted walkers for the 23rd Annual Southwest Florida PSP Support Group Awareness and Memorial Walk event, which took place at Mackle Park on Saturday, March 28. As the largest annual event for CurePSP, walkers flew in from over 22 states. CurePSP is a New York-based nonprofit devoted to the cause of providing resources, lending support, and funding research.

Progressive supranuclear palsy (PSP), corticobasal degeneration (CBD), and multiple system atrophy (MSA) are brain diseases that can cause changes to speech, balance, walking, swallowing, vision, cognition, and autonomic functioning. They can also involve symptoms similar to Parkinson’s disease including tremor, stiffness, and slowness. Because of this, people may initially be diagnosed with Parkinson’s. They are neurodegenerative, meaning that symptoms may change and worsen over time.

This year, there was a total of 275 attendees. After checking in, walkers placed bids on several silent auction items. Raffle tickets for two Lottery Boards and a Barrel of Booze were a crowd favorite. There were also several gift cards for restaurants and retail, and Smokin' Bill Zinn strummed familiar tunes for all to enjoy.

Many of the event sponsors had vendor tables for walkers to visit, pick up educational materials, and engage in discussion. These included gold sponsors The Waldren Team, Turnkey Senior Transitions, and The Arlington of Naples. The silver sponsors were Terracina Senior Living and Avow. The Parkinson's Disease and Movement Disorders Center of Boca Raton had a vendor table. Representatives from the University of Miami, which is part of CurePSP’s center of care network, also had a table. The care network has over 30 medical facilities across the country that are specifically trained in these rare diseases. It's a place for people who have recently been diagnosed and don't know where to turn. A list is available at www.psp.org under Centers of Care.

Local Marco Island realtor, Christine Waldren, found out about the walk four years ago after a cousin was diagnosed with PSP. “It took her a long time to get diagnosed, which is the case with a lot of people that have PSP, because it presents like Parkinson's,” said Waldren. “This one really means a lot to me.

Proceeds from the walk will support three critical initiatives:

Dr. Sally Temple and her team's research at the Neural Stem Cell Institute; The Cure PSP Quality of Life Respite Program, which provides in-home care for families; and the Cure PSP Biomarker Accelerator Program, helping drive earlier diagnosis, better treatments, and ultimately a cure.

Thanks to the Mary Jane Semcer Research Legacy Fund and the Linda Ann Phillips Legacy Fund, the first fifty thousand in contributions were matched dollar for dollar. A total of $130,430 was raised so far, with the campaign open through April.

Several members of the CurePSP team were flown in, including Director of Marketing and Communications, Sabrina Da Rocha, and Senior Manager of Special Events and Fundraising, Christine Sandford, who have both enjoyed watching the event grow over the years. “This is such a great display of our organization, what we are and what we stand for,” Sandford said, sharing how this walk is the largest fundraiser of the year and plays an integral part in their year-round work.

Da Rocha, now on her sixth walk, touched on how the mission has become personal to her through the incredible people she has met over the years, including the late Cindy McDonald, who led this walk for 15 years and was a key part of the Southwest Florida Support Group. “Cindy was the heartbeat of this walk and will be very missed,” said Da Rocha. There were picture boards and special ribbons to wear in honor of Cindy, who passed away in December after a short battle with cancer.

Board Chair Jack Phillips also paid homage to McDonald, “When our team was doing the planning for this, it was evident that there was one seat empty. We missed her bubbly, vivacious, feisty, and those of you who know her know what I'm talking about, spirit.” Phillips was honored to announce three lasting tributes to Cindy: A tribute page on CurePSP’s website showcasing her story and valiant work; the Cindy McDonald Travel Assistance Fund, as one of Cindy’s final wishes was for the ability to attend the walk for all – even if they cannot afford it; and the Outstanding Community Leadership Award, a new recognition was presented posthumous to Cindy.

“She understood this disease, the battle, and how isolating it can be. She had a rare gift of connecting with people, and it was authentic.” Phillips told the crowd, most who had been touched by Cindy in one form or another. “She knew everything about everybody. That's what outstanding community leadership looks like. It's going the extra mile. It's the compassion, and she embodied that.”

McDonald’s family - sister, Terri Bartley; nephew, Nick Bartley and his wife, Marissa; and Cindy’s long-term partner, John Heaman accepted an award on her behalf. Nick shared his memories of working alongside his aunt, helping grow the event year to year. “It's just amazing the impact that one person can have.“

Dr. Larry Golbe, retired neurologist, founding board member, and author of the book 'A Clinician's Guide for Progressive Supranuclear Palsy', gave helpful insight for those recently diagnosed. Having been a part of the organization since its founding in the early 90s, he has devoted his life to valuable research. “It’s about getting to the actual cause of the disease,” said Golbe. “We don't expect to undo the damage that's already been done in a person, but if we could just keep it from getting worse…that would be a huge victory.”

He encourages those recently diagnosed to find and enroll in a clinical trial (in addition to CurePSP’s list, the FDA has more at clinicaltrials.gov). Currently, there is no way of slowing down the progression, but with enough trials, he is hopeful of finding a way.

Reviewing one’s existing medication list at every doctor’s visit is also important, as many can cause side effects that can be confused with the effects of the disease. It takes a knowledgeable, confident doctor who knows the disease, like a Movement Disorder specialist, because they know the disease better than a general neurologist.

Kristophe Diaz, PhD, originally joined CurePSP in 2020 as ‘a science guy.’ “I have a PhD in cell and molecular biology,” said Diaz. “I wanted to do something that matters. Scientists tend to think about just the science but not the application. I realized that the nonprofit world is pretty impactful, so those two things kind of converged.” He became the executive director in ’21 and was appointed CEO one year ago. He has seen the impact that this organization can have in many factors, including the support groups across the country.

As you looked out towards the Mackle Park lake, you could see dozens of signs around the path. Each one contained a picture or the name of a loved one who has been affected by PSP, CBD, or MSA. The walk, for many attendees, is a time of reflection and reminiscence.

“This walk is a shared community; it is what attracted these people here,” said Phillips, whose involvement the past three years happened because his wife Linda was misdiagnosed with Parkinson's before being properly diagnosed with PSP. She passed in 2023. “Here (at the walk), we say ‘we get it,’ as opposed to when we are out and must explain what PSP is.”

MC Farrah Waldren asked those to stand if they, or someone they love, has been impacted by PSP, CBD, and MSA. Nearly everyone was on their feet, “Every person standing here represents hope, love, and the power of connection, and this is a community we're walking for - together.”