CMT Dream Team

Advocates, athletes, parents, kids and professionals who put their own names and faces to CMT. They share their lives publicly so that the next person to hear the diagnosis already knows they are not the only one.

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  CMT2A

  Julie Stone

  CMT adaptive fitness trainer Arizona

  Julie is a NASM certified personal trainer in Arizona living with CMT2A, and trains people with disabilities through adaptive fitness. She describes what she does as promoting self love and acceptance, and she has posted her way through nine hundred sessions, questions and honest days to make the case.

  Read Julie's story →
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  CMT-SORD

  Daniel Blevins

  Combat veteran, adaptive athlete and health coach Arizona

  Daniel is a combat veteran in Arizona, an adaptive athlete and a health coach living with CMT2. Posting as CMT Unbroken, he has built an audience of more than fourteen thousand people who watch him train, coach and talk plainly about the condition. He also raises money for CMT research through cycling.

  Read Daniel's story →
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  CMT3

  Charity Harris

  Children's author and self-publishing advocate California

  Charity is an award winning children's author and publisher in California living with CMT3. She has written twenty one children's books, founded her own press, and been featured by ABC7 Los Angeles and the BBC. Putting disability into children's books is its own kind of advocacy, reaching readers before the stereotypes do.

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  SORD

  Christopher Gullmans

  Advocate and father Finland

  Chris is a father in Finland living with SORD-related CMT, one of the rarer forms and one only identified in recent years. He advocates as a parent as much as a patient, which puts a European voice, and a father's voice, into a conversation that badly needs both.

  Read Christopher's story →
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  CMT2A

  Skyler Fisher

  Future Team USA Paralympian Texas

  Skyler is a para-triathlete with CMT2A, training as a resident athlete at the United States Olympic and Paralympic Training Center with Team USA in her sights. She is also studying to become a veterinarian. Between the track, the pool and the animals, the message is that a diagnosis did not decide the ceiling.

  Read Skyler's story →
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  CMT1A

  Heather Collins

  Adaptive hiking advocate Colorado

  Heather lives with CMT1A in Colorado, writes about disability, and founded AdaptiveHikes, which exists to show that the outdoors should be reachable for everyone. Her work is practical as much as it is advocacy: which trails go, what equipment helps, and what a hike actually looks like when your legs do not cooperate.

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  CMT1A

  Rebekah Knight

  A dedicated para rower and long-time advocate, Rebekah has spent over a decade promoting inclusion, accessibility, and evidence-based exercise for individuals with CMT. Through both online and in-person advocacy, she empowers people to move their bodies with confidence and knowledge. Her mission is to continue supporting the CMT community in embracing exercise as a powerful tool for health and independence.

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  CMT1E

  Mariah Lemke

  Mariah lives with Type 1E CMT and is driven by one powerful goal: to be the representation she once needed as a child. Through storytelling and visibility, she empowers others to embrace their identity and know they are not alone. Her advocacy is rooted in authenticity, self-acceptance, and helping even one person feel seen and understood.

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  CMT1A

  Julie Barrand

  Living with CMT1A alongside multiple family members, Julie has navigated surgeries, burnout, and profound personal rebuilding. After publicly sharing her diagnosis for the first time, she now advocates for collaboration between holistic healing and the medical community. Her work centers on nervous system support, authentic living, and empowering others to strengthen body, mind, and spirit.

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  CMT1A

  The Burke Family

  After their young daughter, Hayden, received a CMT1A diagnosis, the Burke family immersed themselves in research, care navigation, and community connection. Soon after, her father also received his confirmed diagnosis. As a family navigating CMT together, they are committed to sharing resources, supporting other parents, and raising awareness about childhood diagnosis and early intervention.

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  CMT4C

  Zane Taylor

  Plaster artist Florida

  Zane is a plaster artist in Florida living with CMT4C, and describes the work as crafting beauty one layer at a time. The art and the disability advocacy sit side by side on her feed rather than being kept apart, so what you meet first is a working artist and then the condition that is part of the picture.

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  CMT1A

  John Nixon

  Bodybuilder and trainer United Kingdom

  John is a bodybuilder and coach in the United Kingdom living with CMT1A, and a PCA British champion. He coaches other people with CMT specifically, on fitness, confidence and the daily living that fitness quietly makes easier, and he has brought an audience of more than thirty thousand along with him.

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  CMT1A

  Jennifer DeSetto

  Psychiatric nurse practitioner New York

  Jennifer is a psychiatric nurse practitioner in New York living with CMT1A. She brings the rarer combination of clinician and patient to the team, which matters for a condition where the mental health side of a lifelong diagnosis is so often left out of the appointment.

  Read Jennifer's story →
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  CMT2A

  Molly Cutler

  Living with Type 2A CMT, Molly combines her personal journey with professional expertise in health and nutrition. She is passionate about empowering others to feel confident in their bodies and voices. Through advocacy and education, she promotes whole-person wellness and encourages individuals with CMT to take an active role in their health.

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  CMT1B

  Khari Claybrook

  Diagnosed just before his fourth birthday with CMT1B, Khari inspired his mom, Bree, to become a fierce advocate. Bree is dedicated to helping parents recognize early signs of CMT and feel empowered to seek answers. Together, they are shining a light on pediatric CMT and ensuring families know they are not alone.

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  CMT1

  Zac Shad

  Model and bodybuilding enthusiast California

  Zac is a model and bodybuilding enthusiast in California living with CMT1. Pakistani, British and American, he posts under the hashtag emBRACE yourself, a play on the leg braces that are part of an ordinary day. The account is training, travel and the plain business of building a body that works the way his does.

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  CMT1X

  Megan Ballard

  CMT awareness and community advocate Tennessee

  Megan is an advocate in Tennessee living with CMT1X, alongside POTS and EDS. A wife and mother with, in her own words, an Appalachian soul, she writes about chasing adventure despite the obstacles, and about the reality of carrying more than one condition at once.

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  CMTX

  Charlie Stanton-Stock

  Charlie is a professional para cyclist training with the goal of qualifying for the 2028 Paralympic Games. Living with CMTX, he openly shares both the triumphs and realities of navigating fatigue, progression, and high-performance sport. A materials science engineering graduate and longtime CMT camp leader, Charlie bridges lived experience, research, and athletic excellence, proving that barriers can be challenged rather than accepted.

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  CMT

  Marc Daigle

  Adaptive fitness trainer New York

  Marc is an adaptive fitness trainer and triathlete in New York living with CMT. He describes the goal as living life full of happiness and movement, and he coaches that rather than just posting it, running classes and training others who are working out what their own bodies can still do.