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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Break the Silence: CMT Stories and Events

ARE YOU READY?           The Cycle (and Walk!) 4 CMT event at the Old Lantern in Charlotte, VT on Sunday, August 26 will be upon us before you know it! Please act now to reserve your spot to cycle, walk and/or attend the unforgettable after-party! Whether you are attending the event […]

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Public Loo Etiquette: Based on True Stories

  Have you ever wondered why public bathrooms are called restrooms? There is no rest to be had in any public restroom, just stress, fear, and anxiety. Listen, if I want to rest, I’ll just stay home and lie on the couch or go to bed.  Why in the world would anyone want to rest […]

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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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