It’s CMT Awareness Month! How Much Do You Know About CMT?

CMT Awareness Month Quiz – How Many Will You Get Right? Last year, I worked on a version of this quiz for CMT Awareness month. I decided to revamp the quiz by adding a few more questions, rephrasing some of the questions and adding detailed answers. I hope you enjoy the quiz and share with […]

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Ironing Out the Wrinkles of Life-A CMT Story

“These shirts look fine. Why do I have to iron them?” Yohan asked with his serious face.  As he held the shirts at arm’s length and brought them closer to his eyeballs, squinting to make out the “wrinkles”, I pointed the way to the iron and ironing board. Still not game, he shared an idea, […]

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Support Group Meetings – Should I Stay or Should I Go?

“Can you be the elevator guy?” I asked.  “When people walk in, introduce yourself, show them to into the elevator, push the down button and point out the way to the meeting room. Got it?” “Whatever” he sighed, looking exaggeratedly bored. I don’t get it. 5 years ago, he absolutely loved pressing those elevator buttons. […]

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CMT, Carrots and Cones- Rare Diseases to Care About

February 28 was Rare Disease Day!!   Whoop-Dee-Doo! Is that what you are thinking?  Hold on. Before you get all judgmental on me, let me explain why I believe Rare Disease Day to be a noteworthy event. Rare Diseases- The Backstory Passed by Congress in 1983, the Orphan Disease Act defined a rare disease as […]

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CMT: An Obstacle To Success?

  “His test came back positive for what? Sure, that explains a lot, but what’s it called again?” I asked stunned and a lot bewildered. “CHär/- Kät/ -Merēd -TOOTH, which sounded just wrong when he said it. I guess it sounds strange ANY way you say it, but he was completely butchering the French pronunciation of my […]

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9 Surefire Ways to Feel More Positive

Everyone gets down from time to time. When I am not in a good place, I try to think about something positive and uplifting. Sometimes, well okay, often,  my mind brings me to unusual places, which make me laugh. Let me share 9 of my thoughts with you. Do any resonate? You are all winners. […]

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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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