By Sheri Duff
Originally Published by the Shelburne News
While the disorder Charcot-Marie-Tooth is relatively unknown, Chris Ouellette, of Shelburne, and his family work tirelessly to promote awareness of the condition that causes loss of normal function and sensation in the arms and legs.
Their Second Annual Cycle 4 CMT event will be held at the Old Lantern in Charlotte from 8:30am to 5:30pm on Sept. 20. The goal is to raise awareness about Charcot-Marie-Tooth (CMT), a progressive neurological disorder that affects 2.8 million people.
The first annual Cycle 4 CMT fundraising event organized by Ouellette and his wife, Mia, last October was inspired by the positive attitude of their 22-year-old nephew, Yohan Bouchard, who has a CMT diagnosis.
This event is for both cyclists and non-riders. The cycling portion of the event runs from 8:30am to 1pm, and the event party for all attendees will be held from 1pm to 5:30pm.
A day of cycling, great food, live music and bidding on silent auction items provided by local sponsors is planned. At last year’s inaugural event, more than $70,000 was raised to fund research to cure CMT.
“Multiple Sclerosis affects over 2.3 million people and a large percentage of the population has heard about MS,” Chris Ouellette said. “The same cannot be said about CMT. One of the most common hereditary neurological disorders, CMT affects over 2.8 million people and the majority of people have never heard of it.”
The event is fun for everyone whether you’re a cyclist or not, Ouellette said. Riders choose from a number of beautiful cycling rides through scenic Vermont towns. All rides begin and end at The Old Lantern in Charlotte, and each has fantastic views of Lake Champlain and the Adirondack and Green Mountains. Non-riders are invited to attend the after party from 1pm to 5:30pm to celebrate the event’s success. The party includes food, local beer, non-alcoholic drinks, a live band, and a silent auction.
“We want individuals with CMT to be able to enjoy and experience all the activities that define Vermonters and our culture—the ability to bike, ski, ride, and hike—as these activities may not be possible for those with this condition,” Ouellette said. “Participation will help find a way for individuals with CMT to someday experience the best of what Vermont has to offer and what we have all come to enjoy.”
This year’s fundraiser already boasts 125 participants and according to the registration website, supporters have already raised $82,674 towards this year’s goal of $200,000. Anyone can register the day of the event. All proceeds from the event directly benefit the CMT’s Association’s Strategy to Accelerate Research (STAR) drug development initiative which provides the required research to someday stop the progression and eventually cure CMT.
For more information about the second annual Cycle 4 CMT contact Chris Ouellette at (508) 330-5828 or email firstname.lastname@example.org.