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Yohan’s Surgery #5: The Hospital Stay

  I’ve been an active volunteer for the CMTA for the past 13 years. I’ve organized CMT conferences, written articles, acted as an administrator on several Facebook groups, created a presentation to teach kids about CMT, answered Ask the Expert questions, facilitated a CMTA Branch, etc, etc, etc. I thought I was familiar with practically Read More…

Yohan’s Surgery #4: Before the Knife—the Anesthetic

  Everything is fun and games until the anesthesia wears off. The most polite Yohan I’ve ever witnessed was in the recovery room immediately following surgery. He was still under the influence of a light sedative and thanks to the nerve block that numbed his leg from the knee all the way to the toes, Read More…

Yohan’s Surgery #3: And 7 Hours Later…..

  After four hours, we started to wonder, “What is taking so long?” He was wheeled away at 7:30 a.m. and should have been done by noon, at the very latest.  A female voice called our cell phone on behalf of the surgery team several times to tell us that all was fine and to hang Read More…

Yohan’s Surgery #2: The Wait

  The worst part is the wait. Waiting for the weeks, the days, the hours, leading up to the surgery. Now there are only minutes before they bring him into  the OR for this life-altering procedure.  Dr.Pfeffer arrives smiling, wearing scrubs and a sports coat, an odd mix bridging the everyday academic with the skilled Read More…

Yohan’s Surgery #1: Surgery is imminent

  His toes are curled, especially the pinky toe which begs attention by standing just that much higher to make wearing any shoe a challenge. His crescent arches make walking a balancing act. His calves are as tight as the string of a bow and his ankles are turning out as the supporting tendons lose Read More…

Bethany’s Story

I walk to raise money to cure Charcot-Marie-Tooth, a neuromuscular disease that affects me and an estimated 2.8 million people worldwide. I walk, because I can. Five years ago I was barely able to walk 70 steps, but after a year of operations and recovery, and over 20 procedures, I can now walk without pain. Although Read More…

Yohan’s Story

When I was younger, I loved being outdoors and active. My dad and I went on hikes, climbs, bike rides and ski trips. These are very fond, but remote, memories now. CMT stole those experiences from us. CMT is a progressive disease that affects my nerves and makes my muscles weak. Progressive means it gets Read More…

Second Annual Cycle 4 CMT exceeds expectations

The Second Annual Cycle 4 CMT event held on Sept. 20 was a success in so many ways, organizer Chris Ouellette said. 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 Read More…

2015 Cycle 4 CMT fundraiser

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 Read More…

Cycle 4 CMT registration begins

Registration for the Second Annual Cycle 4 CMT event planned for Sunday, Sept. 20 at the Old Lantern in Charlotte at 8am is now open. Organizers Chris and Mia Ouellette have a great day planned and are looking forward to cycling, fundraising, and spreading Charcot-Marie-Tooth disorder (CMT) awareness to help support the required research to Read More…

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