ENGAGING THE OUTDOOR ENTHUSIAST TO CMT AWARENESS THROUGH FUNDRAISING AND RESEARCH
Cycle 4 CMT is a cycling event in support of fundraising to find a cure for individuals with CMT disease (Charcot-Marie-Tooth). CMT is a progressive neurological disease that affects 2.8 million people worldwide, resulting in the inability to effectively use the hands, arms, feet and legs as a result of peripheral nerve damage. There is no cure for CMT. CMT affects approximately 250 people in VT as well as my 23-year-old nephew Yohan Bouchard.
Born and raised in Vermont, I have had the opportunity to experience the natural beauty of this environment as an active cyclist, skier and hiker. I can easily access these activities from my home in Shelburne VT and have been fortunate to share these experiences with others – my children, extended family and friends.
In 2014 I had a vision and drive – I wanted to provide individuals with CMT the opportunity to experience these activities that define Vermonters and our culture. The simple pleasures that we have come to enjoy may not be possible for those with CMT because many experience significant pain in their feet, legs, arms and hands; they may need to wear leg braces, may be confined to wheelchairs, have difficulty riding a bike due to loss of balance and sensation. Yohan tires easily and has difficulty managing the pain when walking. Due to foot deformities, he cannot wear a cycling shoe, ski boot, hiking shoe, etc.
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. The only way to accomplish this vision is through fundraising in support of research to stop the progression and prevent CMT in the future. As a result, Cycle 4 CMT was born in the summer of 2014.
From 2014 to 2016 we successfully raised over $425,000. The money we raised was and will continue to be used to fund our goal and mission… support the development of new drugs to treat CMT, to improve the quality of life for those with CMT and ultimately, to find a cure!