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Latest News

CMTA: Turning Science into Therapies

On Saturday, March 18, the CMTA put on a Patient/ Family Conference in collaboration with the University of Miami. We had a wonderful turnout, with people from all over the world in attendance. Gilles Bouchard, the CMTA’s Board Chair, explained progress to date on CMTA-funded research. I wanted to share my notes with You! In Read More…

Yohan’s Surgery #14: Caution: Foot Surgery Can Cause Insanity

  I just took the sanity test on the internet and despite what you might think, I am NOT crazy. According to the quiz, I am sane, which is a huge relief because now I don’t have to take bust and waist measurements for my custom-made strait jacket. Doubts about my sanity came to a Read More…

Yohan’s Surgery #13: Hans, the Finger and the Dike

  Since Yohan had his cast removed last Thursday, I feel like that Dutch kid, Hans, whose dike-plugging skills prevented a disastrous flood from annihilating his village. Here’s why: Dr. Pfeffer told us at least 99 times that when the cast comes off and the walking boot goes on, “Yohan’s foot is not allowed to Read More…

Yohan’s Surgery #12: My Spiel about Peel

False alarm! We thought the cast was coming off, and it did, for about 30 minutes, before they slapped another one right back on his foot. And what’s with adult orthopedics? The available colors are so exceedingly boring! They did offer pink, orange, black, dark blue…. Yawwwwwn. Yohan wanted tie-dye, rainbow, flames or even animal Read More…

YOU Are Superheroes- Here’s Why

YOU are a Superhero The forces of good are gathering in a small town in Vermont to fight CMT. On Sunday, August 28, men and women from all over the USA are joining the ranks of extraordinary superherodom, as they ride like the wind to cure CMT. Don’t forget: you don’t have to have mind-blowing Read More…

Yohan’s Surgery #11: How to Make Life “Fun” in a Cast

  So many things can go so wrong when you are in a cast. I’m about to tell you true stories. I wish they were not true, but they are. Here is a glimpse of my everyday chaotic life, which is simply an extension of my absent-minded, distracted brain. Quite surprisingly, Yohan did not end Read More…

NEWS FLASH! CMT Experts to Take Part in Vermont CYCLE 4 CMT

  Register to Ride with World-Renowned CMT Experts On one day, and one day only, 3 big names in the field of CMT will come together, under one roof, to participate in the Cycle 4 CMT event in Charlotte, VT. They want to meet you, bike with you and talk to you about CMT and Read More…

The Power of One – Don’t Just Sit There, Do Something!

This is my brother, Chris. He’s the organizer, the motivator, the visionary behind the Vermont Cycle 4 CMT event, which is now in its 3rd year. He’s a wonderful uncle, a cherished sibling and one of the kindest and most thoughtful people I know. He is dynamic, super tidy, business-savvy and always knows where his Read More…

Yohan’s Surgery #10: If You Can’t Beat ‘Em, Join ‘Em

  Due in part to the effects of his CMT, Yohan has never been particularly athletic. When he was young, he enjoyed swimming lessons, played tennis and racquetball, kayaked and camped with his dad. He even learned to ride a horse. As he got older, fatigue, sprained ankles and nerve pain became limiting factors to Read More…

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