Honest family stories, trustworthy starting points, and connection for people living with Charcot-Marie-Tooth disease.
Rooted in one family’s experience with CMT4C. Built for the wider CMT community.
The many types of CMT can look different, but the need for recognition, reliable direction, and human connection is shared. This is a place to turn lived experience into something useful.
From early tiptoe walking to a life-changing diagnosis—and the questions, fear, frustration, and hope that followed.
Explore 02A plain-language starting point for the many genetic types, common experiences, diagnosis, and supportive care.
Explore 03A thoughtful way for people affected by any form of CMT to share experience and feel less alone.
Explore
May 9, 2019 — treating the tightness we could see, years before we knew its cause.First came the tiptoe walking. Then casts, surgery, balance problems, and a search for the reason underneath it all.
The diagnosis finally gave our family a name for what Jack had been facing. It also gave us new questions—and a reason to help other families feel less alone.
Read Jack’s storyLiving story Shared by Jack’s family and revised as his preferences and our understanding evolve.
A diagnosis often arrives with unfamiliar language and too many open tabs. Our plain-language guide explains what CMT is, why there are many types, how it is diagnosed, what people may notice, and what supportive care can include.
This family-led site shares experience and educational resources. It does not provide medical advice or replace professional care.
We favor primary organizations, research programs, and practical guidance—clearly separating established information from personal experience.
Start with trusted sources for CMT basics, care and mobility, school support, subtype-specific research, clinical studies, specialist care, and community.
Browse the libraryParents, caregivers, adults living with CMT, and families seeking youth connections can now reach out through our private connection request.