CurePSP Walk

The volunteers, caregivers, and medical personnel working to combat PSP face a dilemma that groups raising money for cancer, heart disease, and Alzheimer’s don’t face – awareness.  

Many, even most people have never heard of the disease, making getting the word out the first challenge for the group that came out to Mackle Park on Saturday morning. This year marks the 22nd Cure PSP Support Group Awareness and Memorial Walk, and attendance and fundraising numbers keep rising, but there is a long way to go to build a higher profile and let people know what to look for.  

If you have never heard of PSP, you’re not alone. It stands for progressive supranuclear palsy and is used as an umbrella term for a group of neurodegenerative diseases. Symptoms include loss of balance, changes in personality, weakened eye function, and problems with speech and swallowing.  

Like MSA – multiple system atrophy, and CBD – corticobasal degeneration, PSP and these other rare diseases of the nervous system have no known cause or cure, are often misdiagnosed, and affect thousands in the United States.  

Along with the diseases themselves, those with these conditions and their caregivers also suffer from the obscurity and lack of knowledge about the conditions. That’s why events such as Saturday’s CurePSP walk are so important, said Cindy MacDonald, the walk coordinator and facilitator for CurePSP Southwest Florida. 

“My heart is in spreading the awareness,” said MacDonald, whose mother passed away from PSP in 2008. “The money raised is secondary. People are so desperate to be around others who know and understand what they’re going through – people who get it.”  

Meteorologist Jason Dunning put his finger on the crux of the PSP dilemma.  

“One of the biggest challenges we face with PSP is awareness” – or lack of it, said the TV weatherman, once again acting as media guest, greeting the over 300 gathered under the air-nasium at Mackle Park on Saturday morning, up from about 200 last year. They were there raising funds, building awareness, and memorializing those who have succumbed to this mysterious, little-known, and deadly disease.  

Those attending the walk, primarily family members and friends of those afflicted with PSP or working to alleviate it, walked once around the lake at Mackle Park, which was ringed with signs honoring victims and thanking supporters. One of those walking was former Marco Island resident Chris Curle, whose husband, fellow broadcaster Don Farmer, succumbed to the disease four years ago. Christine, Farrah, and Michael Waldren of the Waldren Team real estate group walked and also participated as sponsors of the event.  

After circling the lake, the group lunched on Jersey Mike's subs and homemade cookies and listened to the classic rock stylings of Cathy Orban and Ken Herkes of Five of Diamonds. They entered raffles and a silent auction for items including “Mike’s Barrow of Booze,” a wheelbarrow filled with top-shelf alcohol – expanded this year to two wheelbarrows. Mike Sigrist, who has since died of PSP, started the tradition, which his family and friends continue.  

The crowd heard from national chairman Jack Phillips of Naples and cheered when CurePSP executive director and chief science officer Dr. Kristophe Diaz announced that this year’s event raised over $338,000 – and that was before proceeds from the barrow of booze and other raffles were tallied.  

“We’ve never raised that much,” he said. In addition to providing respite care to help family members serving as caregivers for those stricken with the disease, “trying to avoid caregiver burnout,” dollars donated will fund research into finding biomarkers for PSP and its related conditions, he said. Over the years, the Marco Island walk has raised over $1 million. “And every dollar raised goes to support research and programs – every dollar.”  

CurePSP is a 501(c)(3) charity, and all gifts are tax-deductible. To learn more, or support the organization, go online to www.psp.org.