The Ask: Fundraising Tips!

Idling outside a business in Charlotte, VT, I glance at my brother who is skimming his notes, “Owner’s first name is Phil. Started the company in 1984. My friend, Tina knows Phil’s wife, Patty because their kids ride horses. Got it. ” Then turning to me, with a smirk, he reminds me of my role, […]

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The ASK – An Unbelievably True Story about CMT

          Idling outside a business in Charlotte, VT, I glance at my brother who is skimming his notes, “Owner’s first name is Phil. Started the company in 1984. My friend, Tina knows Phil’s wife, Patty because their kids ride horses. Got it. ” Then turning to me, with a smirk, he […]

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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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CMTA STAR Research: Did You Know?

Neurologist: Well, he has CMT and yes, it gets worse over time. Me: Silence Neurologist: There is really nothing much you can do about it. Me – Silently feeling FREAKED OUT! Neurologist: Young man, at the beginning of the game, you are dealt a specific hand of cards. Some people receive a great hand, and […]

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CMT: So Much More Than Hands and Feet!

  “What’s up with the knee brace?” I asked 12-year-old Rylee, who was visiting from Pennsylvania for a couple of days. Head down, in a whisper, she told me, “My knee keeps popping out of joint. It hurts really bad when that happens. ” Just the thought of having my patella on the side of my […]

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Meet the Funcle!

What’s a Funcle? A Funcle is a Fun Uncle, of course! Yohan’s Funcle Chris (my brother) is a whirlwind of energy, laughter, determination, and gusto.  Our families have remained close over the years, vacationing together, spending summers in Vermont, celebrating holidays together, etc. Here are just a few pictures to illustrate my point:     […]

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In Flora’s Memory – Just Say It! Again and Again and Again!

“My high school years?” she shuddered. “After the doctors diagnosed me with polio at 13-years-old, they wanted to straighten my misshapen feet. So, for the next 5 summers in a row, my school vacations were spent either in the hospital or at home, immobilized, with heavy plaster casts weighing me down.”  With raspy, uneven breath, […]

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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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Raising Kids With CMT-Where In The Heck Is the Manual?

Last week, I purchased a top-of-the-line 4K LED Smart TV with enough options to bedazzle even the most technologically gifted.  Some of the features were intuitive enough that I proudly disregarded the instruction manual altogether.  To my dismay, I soon discovered that a good number of even the simplest functions were complicated, puzzling and downright […]

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Seeking Alternatives to Narcotics: Cannabis

We are in the midst of an opioid overdose epidemic. As the laws on prescribing narcotics become stricter, the millions of people who suffer from chronic and debilitating pain are left to fend for themselves. Denied access to pain-relieving medication, those with excruciating conditions are suffering, searching for alternative forms of relief. It is in this […]

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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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