Chrome Divas rev for CMT

Local News

The Rochester Chrome Divas will help raise money to fight Charcot-Marie-Tooth disease with a Scavenger Hunt ride on Saturday, September 9 beginning and ending at Finn’s Tap Room in Victor.

Zach Houliares, who suffers from CMT6, and his mother Debi, a member of the Chrome Divas, as well as Chrome Divas members Meg Ceccanti, Christine Sturgis and Mary Smith discussed the annual event Friday during News 8 at Noon.

“Zach is visually impaired, actually legally blind, with a vision of 20-400,” Debi explained of CMT6 and its impact on the body. “It effects his gait. He has dropped feet and needs to actually wear these braces to help him function his day to day life. It also has weakness in his hands and he suffers from hand tremors, so it basically attacks all of the puerperal septive nerves, including his optic nerve.”

The disease has not effected Zach’s spirit. He just started his freshman year at Nazareth. “Pretty exciting,” Zach said of his first days on campus. He also works a job at Pinnacle Sports in Victor, and is an assistant football coach for his alma-mater at Victor High School.

The Chrome Divas Scavenger Hunt begins at 10:00 a.m. on September 9 with registration at Finn’s Tap Room. “People come in and register, and then we’ll send them off down into the Finger Lakes for a beautiful ride, and they’re going to be looking for some items that we’ve come up with and they’re just going to have a beautiful day,” Ceccanti said. “They’re welcome to come in a car. It is a motorcycle event, but we’re encouraging people in cars.”

When folks return from the Scavenger Hunt there will be food, drink and prizes. “The community has been very generous, and we have lots of baskets and silent auction items,” said Smith.

All of the proceeds from the fundraiser will go to the Hereditary Neuropathy Foundation, which is starting research for CMT6, and there are some noteworthy gift basket and raffle items. “A couple of big ones are Learn to Ride has donated a beginner’s rider course for 2018, we also have a signed Kenny Chesney guitar, a Genesee Brewery Tour, that’s another big one, and we’ve got some tickets to the Amerks and a signed hockey stick,” said Sturgis.

Jester’s Alibi and The Occasional Saints will provide live music as well.

Tickets are $20 per rider including dinner, $15 per passenger including dinner and $15 music and food only. When you pre-register online before September 7 you’ll receive 5 free raffle tickets, click here

 

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