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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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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Honoring Vicki Pollyea: A Woman of Great Strength, Courage and Conviction

Vicki Pollyea – October 27, 1956 – September 15, 2019 When I first met Vicki over 12 years ago, she was the leader for the Tampa CMTA/MDA branch, the largest CMT group in the country. We hit it off immediately, and I knew she’d be a forever friend, and I was right. Over the years, […]

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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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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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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: 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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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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