Seeing is Believing

Yohan is now in Graduate school in Claremont, CA. He is WALKING on his own 2 feet!  In fact, he’s walking A LOT!! Finding his way around the first day of classes was physically and mentally exhausting, and when he looked at his Fitbit at the end of the day, he had walked right around […]

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How Much Do You Know About CMT?

Top Ten Reasons I’m Talking About CMT in September 10. When I tell people my son has Charcot-Marie-Tooth disease, I get looks like this: Let’s stop the nonsense. I’m looking for reactions of recognition! 9) Besides having cavities and crowns, there is absolutely nothing wrong with my teeth or Yohan’s (Thanks Dr. Tooth) Dr. Howard […]

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Chronic Pain Can Make You Crazy

Oxycodone, Hydrocodone, Mexiletine, Neurontin, Cymbalta, Lamictal, Lyrica, Percocet……. were just a few of the medications I had tried to get rid of my chronic foot pain. The lists of potential side effects were miles long, which totally freaked me out. Anxious people typically do not like to take medication because they are too worried about the […]

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Embracing Differences: Everyone Has Something!

Yohan was diagnosed with CMT 1A at the age of 7. Neither my husband nor I have CMT, so Yohan’s CMT is the result of a de Novo mutation- the first person with CMT ever in our families. CMT just showed up one day on our doorstep as would a long forgotten relative, needing a […]

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CMT BOOT CAMP

CMT BOOTCAMP 2017 It’s a rigorous agenda; and certainly not for the faint of heart.  Some end up here willingly, and others just happen to land here unknowingly, without a means to escape.  Yohan, a victim of the latter scenario, is counting down the days of this grueling summer when he flies free into the […]

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Yep. Feels Just Like Home

              I just spent a week in in Burlington, VT, the town where I was born and raised. The flight seemed longer than usual, which is often the case when I’m excited about returning “home.” The second leg of the journey is always made in the tiniest of aircraft’s, […]

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Yohan Thanks the Cycle’s Sponsors: “I Will Not let You Down!”

    A Shout Out To Our Sponsors and Supporters Year after year, our sponsors generously support the Cycle 4 CMT with silent auction items as well as donations of money, time and service. A big, heartfelt thank you to all our generous sponsors, without whom the Cycle 4 CMT would not be possible. As […]

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