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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Dr. Glenn Pfeffer Answers All Your Questions About CMT foot surgery

The CMTA hosted a very informative talk on Zoom in September, 2020 to the CMT community featuring well-known orthopedic surgeon, Dr. Glenn Pfeffer. I’ve transcribed this talk for you! Enjoy! Elizabeth Ouellette: Welcome Dr. Glenn Pfeffer.  Dr. Pfeffer is the Director of the Foot and Ankle Surgical Program at Cedars-Sinai in Los Angeles. I can’t […]

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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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September is CMT Awareness Month: New Quiz for 2020!

How much do you know about CMT? Take the quiz to find out and let us know how you did! Answers at the end. Good luck! For more information on CMT, CMTA or CMTA STAR research, please visit: http://www.cmtausa.org *Denotes explanation at the bottom of page. 1) CMT is a genetically heterogeneous disorder. What does […]

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Give More Out Of Life!

Over the past 20 years, I’ve gotten to know many people from all all over the world who are interlinked by one common denominator – CMT or Charcot-Marie-Tooth Disease. Despite cultural, social and economic differences, they share a common story, one which includes nerve degeneration, weakened leg/arm muscles, drop foot, claw toes, hand contractures, tremor, […]

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HNPP – The Latest

HEREDITARY NEUROPATHY WITH LIABILITY TO PRESSURE PALSIES Jun Li, MD, PhD Professor and Chairman of Neurology Wayne State University School of Medicine Detroit Michigan Nerve tissues that reside in the skull and spinal canal make up the Central Nervous System (CNS). The CNS extends numerous nerve fibers out of the space of the skull and […]

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NCS VS EMG: What’s Needed for a CMT Diagnosis

Ask an Expert I’m confused about the difference between electromyograms (EMG) and nerve conduction studies (NCS)—can you please explain? Dr. Richard A. Lewis* answers: EMG, which stands for electromyogram (“myo”= muscle), is the term used for electrodiagnostic tests (EDX) for neuromuscular disorders. The total EDX includes both nerve conduction studies (NCS) and needle EMG. Depending […]

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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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