What a Difference a Year Makes!

This year’s 21st Annual CurePSP Awareness and Memorial Walk is Saturday, March 2nd from 10:30 AM to 1:30 PM, and participants have much to celebrate. 

The walk is more than a casual stroll around the scenic Mackle Park Lake on Marco Island. It’s a step-by-step way to make more people aware of deadly neurological brain diseases and the toll they take.

These neurodegenerative diseases have daunting names such as progressive supranuclear palsy (PSP, corticobasal degeneration (CBD) and multiple system atrophy (MSA). And they all have the same outcome: mental and physical decline…and death, much like the better-known and better-funded brain diseases Alzheimer’s and Parkinson’s.

Naples resident Jack Phillips, whose wife recently died of PSP, is the new chairman of CurePSP, the national foundation fighting such brain diseases. He senses a new energy in the now-global quest to defeat them.

“International research forums are packed with researchers who are working hard on earlier diagnosis and new drugs,” he says. “And new clinical trials are launching.”

Decades of activism have paid off, from the halls of the US Congress to the research labs of dedicated scientists, to efforts to ease the pain of patients and their families.

Lawmakers in Washington D.C. are expected to pass The Dr. Emmanuel Bilirakis and Honorable Jennifer Wexton National Plan to End Parkinson’s Act. Its intent is to 1. Unite the federal government and private enterprises in a mission to end degenerative brain diseases, 2. To alleviate the financial cost to families, 3. And to promote patient care. 

Representative Wexton, a US congresswoman from Virginia, announced last spring that she has PSP after being misdiagnosed with Parkinson’s. At that time, she pledged to take action.

“I want to bring about as much good from this diagnosis as I can, and I look forward to doing just that here in Congress.

“This (End Parkinson’s Act) is great publicity for PSP, and it sure needs it,” says an enthusiastic Dr. Lawrence Golbe, Chief Medical Officer of CurePSP.

 “When progressive supranuclear palsy is mentioned on the floor of the US House of Representatives and in press releases,” he explains, “that’s rare and valuable publicity.”

Jack Phillips agrees. “PSP, CBD, & MSA are included by name in the proposed act. There’s a new hope in the air.”

Phillips also is encouraged by the expansion of care tailored for PSP patients.

“We now have thirty-three Centers of Care across the US and Canada. Three are here in Florida, in Gainesville, Tampa and Miami.

Kristophe Diaz, Ph.D., the CurePSP Executive Director & Chief Science Officer, also will be walking at the fundraiser. He is pleased that some of the proceeds will support the caregiver respite program, which parallels the medical research and patient care.

The program allows caregivers to take a break, “to relax, see friends, run errands, exercise, have a change of scenery or do whatever else they need to find respite from caregiving and attend to their own physical and mental wellbeing.”

Of course, funding is crucial to all aspects of dealing with these deadly brain diseases.

At the heart of research into PSP is Dr. Sally Temple, Ph.D., the Scientific Director of Neural Stem Cell Institute in Rensselaer, NY. 

Dr. Temple also will participate in the upcoming walk and will share news of some promising research. She is focused on a drug aimed at reducing abnormal proteins linked to diseases such as Alzheimer’s and PSP.

“This drug could be a game changer for dementia diseases,” she says. “We know that much more work needs to be done…, but we can be excited by this progress.”

The reason for the upcoming fundraiser is serious, but the annual walk is all fun and games and food, according to event founder, Cindy MacDonald, whose mother died of PSP.

“We have a buffet lunch, live entertainment, a silent auction, chances to win great prizes and, of course, the approximately half-mile optional walk around the Mackle Park Lake.”

NBC- 2 Meteorologist Jason Dunning has a personal reason for returning this year as a special guest speaker.

“I’ve witnessed how debilitating and devastating these diseases can be, so this is a special opportunity for me,” he explains, “having the chance to play a small part in a cause like this.”

Registration at the event or before is $25 per person, $10 for students. For myself, I will walk to remember my late husband, Don Farmer, who died with PSP. You can register or donate at give.curepsp.org/MarcoIsland2024, 347-294-2831, events@curepsp.org.