Walking for a Cure

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 NBC-2 meteorologist, greeting the nearly 200 gathered under the airnasium at Mackle Park on Saturday morning, March 2nd. They were there participating in the 21st annual Southwest Florida PSP Awareness & Memorial Walk, 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. A number of the participants dealing with the effects of the disease were in wheelchairs, including Catherine Boltz, who donated $100,000 to the cause. She was accompanied by a human caregiver and Kirby, a support dog, one of several who joined in the walk. 

After circling the lake and passing through a group of radio-control sailors who were holding a regatta, the group lunched on Jersey Mike subs and homemade cookies, listened to speakers, and entered raffles and a silent auction for items including Apple iPads and a “Mike’s barrow of booze,” a wheelbarrow filled with over $1,300 of top-shelf alcohol. Mike Sigrist, who has since died of PSP, started the tradition, which his family and friends continue. 

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.” 

The donations raised, over $213,000, will go to support PSP research, primarily the work of Dr. Sally Temple, 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.

Jack Phillips of Naples, national chairperson of CurePSP, told the group that after years of obscurity and frustration, there is progress in research efforts fighting the disease. 

“Now there’s a lot of medical action. There are three clinical trials ongoing that are promising,” he said. He noted that the Southwest Florida CurePSP walk is the largest fundraising event in the country. “In three years, we’ve raised almost $600,000. And every dollar raised goes to support research – every dollar.” 

Phillips, whose wife Linda Ann died last year of PSP, and Frank and Mary Jane Semcer made major gifts to the cause. CurePSP also helps to fund respite care for those acting as caregivers for PSP sufferers, which can become a more than fulltime job. 

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 reporter Chris Curle was there marching to honor Don and helping organize and publicize the event.

The group thanked sponsors including Avow Hospice, Coastal Breeze News, NBC-2, Nephrology & Hypertension, Neurology Specialists, and Terracina Grand Senior Living. For more information on CurePSP, their monthly support meetings and charitable giving opportunities, contact Cindy MacDonald at 239-353-3960 or go online to www.curepsp.org.