Honest family stories, trustworthy starting points, and a place to find people who understand.
Centered on Type 4C. Welcoming everyone affected by Charcot-Marie-Tooth disease.
CMT4C can make a family feel like the only family in the world facing it. This is a place to turn lived experience into something useful: recognition, reliable direction, and connection.
From early tiptoe walking to a life-changing diagnosis—and the questions, fear, frustration, and hope that followed.
Explore 02Plain-language information and carefully chosen links for families learning about this rare form of CMT.
Explore 03A thoughtful way for people affected by CMT4C—and the wider CMT community—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 CMT4C is, how it is inherited and diagnosed, what families may notice, and what supportive care can include.
Read the guideThis 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 CMT4C basics, care and mobility, school support, research and trials, specialist care, and community.
Browse the libraryWe are beginning with stories and trustworthy information. A safe, personal way for families and adults with CMT to connect will come next.