What’s a Funcle? A Funcle is a Fun Uncle, of course! Yohan’s Funcle Chris (my brother) is a whirlwind of energy, laughter, determination, and gusto. Our families have remained close over the years, vacationing together, spending summers in Vermont, celebrating holidays together, etc. Here are just a few pictures to illustrate my point:
Yohan looks up to Funcle Chris for many reasons, one of which is his relentless drive to be part of the mission to put an end to CMT or Charcot-Marie-Tooth disease with our annual “Cycle (and Walk!) 4 CMT.
CMT does not run in our family. Yohan’s CMT is the result of a new genetic mutation. There are many subtypes of CMT, and he has the most common type – CMT1A. It’s intriguing to know that CMT is known as a heritable disorder, but spontaneous genetic mutations causing CMT do happen – it could even happen in your family!
Compelled to change the fate of so many with CMT, he changed his anger and frustration to ACTION! Here is his story:
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.
In 2014 I had a vision and drive – I wanted to provide individuals with CMT the opportunity to experience the activities that define Vermonters and our culture. CMT affects approximately 250 people in VT as well as my 25-year-old nephew Yohan Bouchard. 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 2017 we successfully raised over $640,000. 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!
Please help find a cure for CMT – Join us on August 26, 2018 to enjoy incredible cycling, breathtaking views of Vermont’s Lake Champlain and the Green Mountains while fundraising for a great cause!”
To learn more about our Cycle (And Walk!) 4 CMT, please go to our website: www.cycle4cmt.com. Come to meet the Funcle, his nephew, Yohan and all the wonderful individuals who make this event successful year after year. Can’t come? Well, a donation of any amount would help us reach our $250,000 goal. All the funds raised will be earmarked for CMT cure-driven research! Sponsor the event here: https://cmta.akaraisin.com/Common/Participant/Search.aspx?seid=16550&mid=22
Trust me folks, Funnel Chris is for real!
Hey folks, Funnel Chris is on spell check; but, Funkle Chris really is for real!
I hope they add Funcle to the list of new words in the dictionary this year,
Love the pictures and the message.
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I know what it’s like to have a fun uncle and Chris is much more than Yohan’s favorite uncle, he’s doing amazing things for Yohan and every one with CMT. Wow this guy is amazing and I think I’m going to see if I can put together a walk for CMT this year. Thank you Elizabeth for this great blog
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Thanks Quentin for your comments. How I appreciate your support and feedback. It would be great for you to put together a walk! Just Do IT!!