What a gratifying day to learn that this bunch of new and old friends along with my family raised over $600,000.00 in 4 years for the CMTA t...o fund research in this awful disease for which there is no cure! At least not yet! For more info on this disease go to Cycle 4 CMT and find out what you can do. The events were organized by my brother Chris Ouellette. Congratulations Chris on pulling this remarkable feat together with Mia, Elizabeth, Giles, Kathleen and countless others!
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!
Learn about CMT
Charcot-Marie-Tooth Disease, or CMT, slowly destroys the peripheral nerves, all the nerves outside the brain and spinal cord. This nerve damage causes muscle weakness and wasting, and some loss of sensation, mostly in the extremities of the body: the feet, the lower legs, the hands and the forearms.
Some common symptoms include:
Foot deformity (very high arched feet);
Foot drop (inability to hold foot horizontal);
“Slapping” gait (feet slap on the floor when walking because of foot drop);
Loss of muscle in the lower legs, leading to skinny calves;
Numbness in the feet;
Difficulty with balance;
Later, similar symptoms also may appear in the arms and hands.
CMT almost never affects brain function.
CMT affects about 2.8 million people worldwide. MS affects 2.5 million people worldwide. We’ve all heard about MS but few know about CMT. It is the most common disease no one has ever heard of.
There are no known treatments that will stop or slow down the progression of CMT, but the CMTA is funding research to find these treatments.
– for additional information please visit CMTA USA http://www.cmtausa.org/