Guest Blogger: Kenneth B Raymond Tackles the Question – How Do You Explain CMT?

Eleven years ago, late CMTUS founder, Gretchen Glick and I talked about starting the first ever CMT Awareness Week. The 2 organizations (CMTA and CMTUS) worked collaboratively to get the word out about CMT. At the CMTA, I had posters created, wrote email blasts, and asked our branch leaders to spread awareness through groups across […]

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       Reaching For the Stars………and Beyond                                                                                                                         

Thank you all for your unwavering support of a cause so dear to my heart – CMT. Yohan was diagnosed 22 years ago with this progressive neuromuscular disease (the nerves deteriorate and in turn. the muscles atrophy). Where has the time gone? As we turn the page, Yohan, at 29, is starting a new chapter […]

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Seeing From the Heart

I was flagged by Sister Helena in 5th grade; she sent me down the hallway to a dark room, where I sat until a woman instructed me, “Read the eye chart.” I started at the top row and slowly made my way down to the third row, “E, F, P, no, Ummm B, F? no, […]

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Life With Purpose – Redefine Time

Flipping through my expired French passport, Gilles made a loud gasping noise, “You haven’t been back to France in 18 years!” “C’mon. It can’t be that long,” I countered. Squinting to see the faded passport stamp, I made out 15/06/2003. “Yikes! Where have I been? What have I done? Where’d the time go?” I wondered. […]

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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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