Faces of CMT
Behind every gene and every statistic is a person. These are some of the families living with Charcot-Marie-Tooth disease, in their own words. Their stories are why we work to cure CMT.
Looking for our ambassadors? Meet the CMT Dream Team.
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Alan Jackson
The Country Music Hall of Famer went public with his CMT to help millions understand a disease most people had never heard of.
Read their story › -
CNTNAP1James
James' Cure
Born with an ultra-rare CNTNAP1 mutation, James and his family are pushing for a gene therapy.
Read their story › -
CMT6 / MTRFRJaxson Flynt
Jaxson's Crusaders
Diagnosed with an MTRFR gene defect as a toddler, Jaxson keeps meeting milestones doctors thought impossible.
Read their story › -
CMT6 / MTRFRZach Houliares
Zach's Team
After 14 years without answers, Zach was diagnosed with CMT6 and MTRFR mitochondrial disease.
Read their story › -
CMT2AGrace Caldarone
Grace's Courage Crusade
A mother and daughter living with CMT2A, turning their family's mission into research, books, and school outreach.
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CMT2AElliot
Iris Adler's H.E.L.P. Fund
A grandmother's fund for her grandson Elliot, who lives with CMT2A.
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CMT1ABernadette Scarduzio
HNF's longtime national spokesperson and the subject of the first full-length documentary on CMT.
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HNPPThe Westerkamp Family
Westerkamp Family's HNPP Fund
A father and son who both live with HNPP.
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GDAP1 / CMT4AAlana Kohler
Alana's parents both carry the same rare GDAP1 gene. Four surgeries in, they are hopeful for gene therapy.
Read their story › -
GDAP1 / CMT4AOwen
Diagnosed with aggressive GDAP1 CMT4A at age 6, Owen and his mom are holding out for a cure.
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GDAP1 / CMT4AEstela Lugo
HNF's Program Development Manager, a designer turned adaptive-fitness activist living with CMT4A since age four.
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CMT1AAllison Moore
HNF's founder and CEO, living with CMT1A, who turned a hospital mishap into a foundation built to make CMT a household name.
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CMT1AAddie
Addie's Tale
Diagnosed young with CMT1A, Addie meets every appointment and brace as a champ, and her family wants a world without CMT.
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CMT-SORDDaniel Blevins
A veteran and adaptive athlete in Arizona who spent thirteen years watching his body decline before anyone told him he had CMT.
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CMT2ASkyler Fisher
Diagnosed at 13, now an elite para triathlete training at the U.S. Olympic & Paralympic Training Center and studying to work with animals.
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CMT2AJulie Stone
Foot drop at six, a diagnosis at 28, and a family history nobody had mentioned. Now a personal trainer whose clients also live with CMT.
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CMT1AJennifer DeSetto
Diagnosed at 41, months after losing her father to CMT complications. One video reached a national audience and she has been talking about it ever since.
Read their story › -
CMT-SORDChristopher Gullmans
A father in Finland with CMT-SORD, diagnosed only after his wife, a physician, took one look at his legs. He advocates as a parent as much as a patient.
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