UK’s Peter NEVILLE: CMT Warrior

  By Peter Neville How should I start? The beginning’s always a good place! Join me on my journey!  Childhood Struggles As a child, all the tell-tale signs were there; you know, the not being able to run fast, tripping over your own feet or hanging onto the old rope swing across the river. Yes, […]

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Old Man’s Journey with CMT

By Jeff Dols My name is Jeff Dols. I am 71 years old and I have Charcot-Marie-Tooth disease. I don’t mean for that to sound like an AA meeting, but it’s just a few basic facts. While it’s not my intent to preach at anyone, a little preaching may be involved. Some background: I was […]

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My Uncle Chris is Phenomenal

My son Yohan was diagnosed with CMT at 7 years old. We have no prior history of CMT in our families. Yohan has CMT due to a new spontaneous genetic mutation. He’s the first in our family to have CMT. Though Yohan’s CMT has thrown roadblocks and presented challenges in his life, it’s also made […]

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CMT AND LOSING WEIGHT

By Sara Kevern* Q: I have gained a lot of weight since March after the start of the shelter in place, and continued to gain throughout the year due to COVID restrictions, stress, etc. Is CMT making this worse? What can I do about it? A:  First of all, you’re not alone! This is one […]

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Never Say Never: How an Ebike Rocked Our World

The training wheels came off my own bike so long ago; I’d forgotten the emotions, challenges and vulnerable feelings of trying to balance on two wheels for a few pedal strokes without crashing to the ground. In fact, I had always taken riding a bike for granted until my 5 year-old son, Yohan, attempted to […]

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Ulcers & CMT

I have an ulcer on my foot that will not heal. Is this typical of CMT? Dr. Joseph Gregory Stilwell, DPM writes: Yes,ulcers can be quite common with CMT. Oftentimes because a bone is prominent, and taking excess pressure- irritation occurs.  Then, with decreased sensation and other changes in the skin along with possible diminished […]

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CMT Awareness Month Quiz! New Questions – 2019

1) Charcot-Marie-Tooth Disease (CMT) is also known as: a. Inflammatory Nerve and Muscle Syndrome b. Hereditary Motor and Sensory Neuropathy c. Funky Foot Disorder d. Chronic Tendinopathy with fatigue 2) How many different inheritance patterns does CMT have? a. 1 b. 2 c. 3 d. Too many to count. 3) Can CMT skip generations? a.Yes […]

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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! […]

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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 […]

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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 […]

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