“Funds are what stand in the way between us and a treatment for CMT1A [a type of CMT]. Not scientific understanding. Not resources. Not clinics. Not patients. Money,” according to the Cycle 4 CMT website.
CMT is estimated to affect about 2.8 million people worldwide. It is genetic, and there are no treatments yet that can slow or stop the damage the disease causes to the peripheral nervous system — the long nerves that extend throughout the body. Typically, patients experience loss of muscle function, numbness, and pain in their lower legs, which can later extend to their hands and arms.
The annual event is not a race, but an opportunity to ride or walk one of four different routes ranging from 6.5 to 40 miles and enjoy the beauty of the Lake Champlain area. After the ride, participants will gather at the Old Lantern Inn and Barn for an after party with a catered meal, local craft beer, live music, games, and a silent auction. Those who prefer not to cycle are still invited to sign up and enjoy the party.
Cycling participants are asked to raise a minimum of $200 and walking participants $100, along with their $55 registration fee, which will be donated to the CMT Association (CMTA), a nonprofit dedicated to finding a cure for the disease.
CMTA brings together CMT researchers and pharmaceutical companies in hopes of expediting breakthroughs. It also supports patients through conferences and community programs.
Since its launch in 2014, Cycle 4 CMT has raised more than $640,000 to support research into treatments for the disease.
Chris Ouellette, the organizer of the event, was inspired by his nephew, Yohan, who was diagnosed with CMT at age 7. Yohan, now 25, is no longer able to enjoy the many outdoor activities that Vermont has to offer as his disease has progressed over the past 18 years.
Since foot deformities often accompany the disease’s hallmark progressive nerve damage, Yohan cannot wear cycling shoes or ski boots, for example. Many patients have difficulty with balance and may require wheelchairs, limiting their options for enjoying the outdoors.
“I realized that an opportunity existed — connect the passion and energy that Vermonters possess for outdoor activity to a day of fundraising so individuals with CMT can someday enjoy these simple pleasures,” Ouellette says on the event’s website.
For more information or to register for the event, visit here. New this year, a Virtual Rider or Walker Program is being offered for those who want to participate but cannot attend the event. Donations are also accepted.