Pony Takes Stand to End CMT

OUR STORY – Yohan and I had so much fun trail riding when we were younger. Oh, the stories we could tell!! I’ll never forget the time I stepped in a bee’s nest and ran for my life with Yohan on my back! He held on to my mane and stayed on. Phew! Close call! […]

Read More

Life Advice: Athos the Horse (Almost)

    My birthday is on March 9. My buddy, Yohan and I are turning 26 years old. Besides a stiff leg and a couple of pigeon fever bumps on my chest, I’m doing pretty well for an old guy. Yohan took really good care of me for a very long time. His CMT got in […]

Read More

HELIOS® Braces

by Mitch Warner, CPO The Helios® orthosis is a custom made energy storing carbon fiber AFO. The Helios® provides balance, stability, and a more natural gait pattern.  Utilizing triplanar control*, dynamic response*, and floor reaction*, these corrective forces stabilize the foot and ankle to give standing and walking stability that is necessary for normal walking that […]

Read More

CMT: The Most Common Rare Disease You’ve Never Heard Of!

  “Liz baby, Liz baby, baby, baby, Liz baby!” he sung every time we crossed paths. Pete was my postman when I was in college at the University of Vermont. Tall, good-looking, great personality – Pete, a proud Jersey boy, knew everyone in town and everyone knew Pete. After years with the post office, he […]

Read More

Guilt Giving: Let Me Count The Ways

I walked into the ice cream store, craving a scoop of malted milk ball deliciousness – in a waffle cone, of course. As the only bona fide paying customer in the shop, I expected quick and efficient service, but the middle-aged man freaking out about his lost credit card was getting all the attention. The […]

Read More

How Do You Spell Progress in CMT Research? STAR!

On the 10th Year Anniversary of the launch of STAR (Strategy to Accelerate Research), CMTA Chairman, Gilles Bouchard, gives a webinar explaining the current status and remarkable advances made in CMT research. This webinar was so informative and well-done, I transcribed it for you. Spread the word folks. Pretty amazing work being done right now. […]

Read More

The Elusive Diagnosis: When Doctors Just Shrug

Rip Van Winkle. Ring a bell? He’s the fellow who wandered about in the Catskill Mountains only to meet up with a group of ornately-dressed bearded men who uttered not a word. They may not have been a chatty bunch, but the liquor they shared was laden with a sleeping potion that stole 20 years […]

Read More

Therm-a-Rest Founder Offers Unforgettable Gifts to CMT Community

James Lea It was in the winter of 2012 that we met the elderly man sitting in a bulky hospital-style wheelchair, covered from shoulder to toe with a plush blanket. Jeana Sweeney and I had flown to Seattle, WA to speak at a local CMTA branch meeting. We had just begun the presentation when a […]

Read More

12 Compelling Reasons I’m Talking About CMT This September

Top Twelve Reasons I’m Talking About CMT during Awareness Month   12) Confused Faces-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, like Dr. House’s below: 11) Dentures? Besides having had too many cavities, crowns, and pulled teeth, there is […]

Read More

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 […]

Read More

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 […]

Read More

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 […]

Read More