LIVERPOOL — As the Syracuse chapter of the Charcot-Marie-Tooth Association ramps up fundraising for its third annual Walk 4 CMT on Sept. 18, the chapter has even more reason to celebrate: Assemblyman Bill Magnarelli will honor the Syracuse Walk 4 CMT on Sept. 14.
Despite the ever-changing safety protocols for the ongoing COVID-19 pandemic, Syracuse CMTA branch leader Mike Casey — no relation to this reporter — is optimistic about the event, which steps off at Willow Bay in Onondaga Lake Park.
“Everybody’s been very cool about this,” Casey said.
Among Walk 4 CMT’s sponsors are Syracuse Orthopedic Specialist, Wegmans, Price Chopper and Aldi. Casey thanked Onondaga County Parks for agreeing to host the walk once again.
CMT is a group of hereditary disorders that cause damage to the peripheral nerves in the limbs, hands and feet. Symptoms of CMT include difficulty walking or maintaining balance, muscle spasms, high arches or flat feet, and tingling or burning in the hands and feet. There is no cure and it is believed to originate from a genetic mutation.
While the Syracuse walk has a fundraising goal of $5,000, Casey said he is hoping participants will get more out of the event than donations. The top fundraiser will receive a $100 gift card from Aldi, and participants will have the opportunity to receive a Walk 4 CMT T-shirt by raising $100 or more.
“We’re also telling people if they’d like to bring their four-legged critters, they can bring their dogs or puppies,” he said. “We just want people to get out and enjoy themselves again.”
Participants also can register for a chance to win ankle-foot orthoses (AFOs) worth $2,000 from TurboMed.
“I think that’s super,” Casey said, adding that his own AFOs have improved his balance and allowed him to stay active.
While Casey always strives to stay positive, he said his CMT symptoms forced him to retire from his teaching career in the Liverpool Central School District and quit his beloved pastime of golf. He needed neck surgery after he fell on ice and hit his head. The disease is now beginning to affect Casey’s fine motor skills.
“My handwriting has gotten worse. I don’t like writing as much as I used to. Simple things like cutting a steak or twirling spaghetti become impossible. Handshakes are difficult,” he said. “I don’t like taking the meds because it makes me goofier than usual.”
The CMT Association’s slogan is “Funny Name, Serious Disease,” as Charcot-Marie-Tooth disease is named after the three doctors who discovered it in the late 1800s.
“To me, I gave it a new meaning.: ‘Can Make Trouble!’” Casey said. “Most, if not all, my friends, know that I am really good at making trouble, and I feel that through scientific research, that a cure will be found.”
The Syracuse Walk 4 CMT takes place Saturday, Sept. 18, at Willow Bay in Onondaga Lake Park, Liverpool. Registration begins at 9 a.m., Jeff the Magic Man will perform at 9:30 a.m., and the walk starts at 10 a.m. Visit cmtausa.org/syracusewalk to register or donate. For more information, contact [email protected] or 315-439-9325.
