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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Discovered: Modern Day Superman

SUPERHEROES I’ve seen the name, Quentin Martin, like everywhere on the CMTA social media pages lately. And coincidentally, just last week,  he reached out to me about promoting igive.com for the CMTA.  But, before getting into all that, let me tell you a bit about our friend, Quentin. A Little Background As a youngster, he […]

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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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Home For the Holidays – The Story of a True Life Adoption

Her parents passed all the tests with flying colors and were deemed to be fit and loving. The arrival date was only 2 weeks away – just 2 weeks! So little time to prepare for the new little one  – and right before the holidays, too – the best Christmas present ever! I melted when […]

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CMT Is Exhausting: 5 Insider Tips For Friends

Judging a Book by its Cover-Just Don’t “Who is that girl?” she asked, squinting warily while jerking her chin forward like a rooster, not so discreetly pointing out the slim, well-dressed woman in question. “She doesn’t have CMT! Look at those heels!! Pfft! Forget about it. She’s a fraud!” It’s true, Jeana did not appear […]

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23andMe? Not For CMT!

  I’ve known Carly Siskind for at least 15 years. She is a board-certified genetic counselor who worked with Dr. Michael Shy at the Wayne State CMT clinic in Detroit (Dr. Shy’s CMT Center of Excellence is now in Iowa). Today, Carly is currently working at Stanford University and Hospital and Lucile Packard Children’s Hospital […]

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