Walking for PSP: Event spreads awareness for little-known deadly disorder

Lance Shearer

It’s not Alzheimer’s disease. It’s not Parkinson’s. But the devastating effects of PSP and it’s even more obscure cousins MSA and CBD rival those of the better-known neurological disorders.

Saturday morning at Mackle Park, over 200 supporters held a walk against PSP, supporting efforts to study and fight the disease, and honoring those who have succumbed to it.

While their numbers and the dollars raised can’t match fundraisers for cancer or heart disease, both the number of participants and the monetary donations received set new records for the Southwest Florida wing of CurePSP, the organization dedicated to raising awareness and dollars.

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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 the 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.”

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At the same time, the group’s record-breaking take of over $250,000 in donations for the weekend event will be put to good use, going to support the research of Dr. Sally Temple, the scientific director of the Neural Stem Cell Institute in Albany, New York. Dr. Temple was on hand at Saturday’s march to thank the participants.

“We’re here to raise money to support the patients and caregivers, and also to remember those who lost their battle,” she said. Like in Alzheimer’s and Parkinson’s, in PSP-linked diseases, toxic molecules build up in brain cells and eventually the cells die.

It was a beautiful, warm “winter” day on Marco Island, the last day of winter, well up in the 80s and humid. Dr. Temple said they could have held the walk in Albany, where she said they are just beginning to transition from the “ice season” to the “mud season,” so she was glad to be in Southwest Florida. Kristophe Diaz, CurePSP executive director and chief scientific officer, also spoke to the group.

“The core of our mission is educating the medical community, so diagnoses can be made sooner,” he said.

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With many of those attending afflicted with PSP, the walk was limited to one lap around the Mackle Park lake for those who could do it. Passing by the dog park, and under the shade of gumbo limbo and oak trees, various palms and one brilliantly flowering yellow tabebuia tree, it was a great walk for a worthy and under-publicized cause.

One of those who lost his battle against the disease was Marco Island’s own Don Farmer, longtime network anchor and journalist, who died a year ago of PSP along with Alzheimer’s. His widow and fellow television co-anchor Chris Curle was there to honor Don, marching along with his daughter Laurie Farmer, and friends Mary Zachrich and Sadie Kellermyer.

Don Farmer’s photo was on a sign, one of those ringing the lake as the marchers passed, along with others thanking the donors and supporters who made the event work. These included Avow Hospice, Terracina Grand Senior Living, Coastal Breeze News, and several home health care providers. Music was provided by Cathy Orban and Ken Herkes of Five of Diamonds.

After walking, participants sat down to a lunch featuring cheeseburgers cooked by John Heaman on the grill loaned by the Marco Fire-Rescue Dept., and a selection of home-baked cookies and desserts unrivalled by any other local fundraising event.

Your grandchildren would tell you PSP stands for PlayStation Plus, but PSP the disease is deadly serious. For more information on CurePSP, their monthly support meetings and charitable giving opportunities, contact Cindy MacDonald at 239-353-3960 or cmac5371@aol.com.