Resources worth your time
A focused collection for understanding CMT, making care decisions with professionals, navigating school and daily life, tracking broad and subtype-specific research, and finding people who understand.
Useful before overwhelming
We favor official government, academic, clinical, and established CMT organizations. We look for material that is current, transparent about its purpose, and genuinely useful to families.
This library is a starting point, not an endorsement of every statement on an outside site. Research listings are not treatment recommendations, and educational material cannot replace advice from Jack's—or anyone else's—care team.
Understanding CMT
Reliable explanations of the wider CMT family, its many genetic types, inheritance, diagnosis, and our family’s CMT4C subtype.
CMT words and the people who help
Plain-language explanations of common CMT terms, equipment, tests, and the specialists who may be involved in care.
Read the guideNewly diagnosed with CMT? What we wish we knew
A family-to-family orientation to the first overwhelming questions: what a diagnosis means, what it cannot predict, what to ask, and where to begin.
Visit resourceCharcot-Marie-Tooth Hereditary Neuropathy Overview
A clinician-authored overview of CMT classification, diagnosis, supportive management, inheritance, and genetic counseling.
Visit resourceTypes of CMT
An approachable guide to the major CMT groups, inheritance patterns, and the genes associated with different types.
Visit resourceSH3TC2-Related Hereditary Motor and Sensory Neuropathy
The most detailed clinical reference specific to CMT4C, including diagnosis, management, inheritance, and family testing.
Visit resourceCharcot-Marie-Tooth disease
A clear, family-friendly overview of CMT symptoms, causes, inheritance, and how often it occurs.
Visit resourceUnderstanding CMT4
An approachable introduction to the recessive CMT4 group and its subtypes, including CMT4C.
Visit resourceSH3TC2 gene and available tests
Technical gene information and a directory of genetic tests submitted by laboratories.
Visit resourceCare, mobility & daily living
Practical guidance to help frame conversations about therapy, braces, movement, safety, and day-to-day independence.
AFO braces and shoes with CMT
A practical look at the everyday routine, fit questions to raise, shoe features families may discuss, and signs that deserve a call to the care team.
Read the guideCMT hereditary neuropathy overview
A clinician-authored overview of diagnosis, supportive management, surveillance, and genetic counseling across CMT types.
Visit resourcePhysical & Occupational Therapy Guide (2018)
A practical guide for therapists and families covering evaluation, stretching, exercise, orthotics, hands, fatigue, and safety.
Visit resourceSpotlight on CMT learning series
On-demand sessions about research, supportive care, orthotics and bracing, resilience, genetic testing, pain, and symptoms.
Visit resourceSchool & accommodations
Starting points for explaining CMT to a school and understanding disability protections in U.S. public education.
CMT guide for schools
Suggestions for teachers and families on mobility, fatigue, classroom tools, physical education, classmates, and participation.
Visit resourceSection 504
The federal starting point for Section 504 protections and resources for students with disabilities.
Visit resourceDisability discrimination FAQs
Plain answers about evaluation, accommodations, related services, equal access, and schools' responsibilities.
Visit resourceResearch, registries & trials
The most important current CMT4C treatment research, plus places to contribute de-identified experience and look for studies. Eligibility always comes from the study team—not a web page.
Project Foresee: September 2026 development update
CMTA reports that manufacturing is underway, with formal preclinical toxicology studies planned for the first quarter of 2027 to support a future IND application.
Visit resource2026 dose-escalation and safety study
A May 2026 peer-reviewed CMT4C gene-replacement study reports dose-dependent functional and nerve improvements without observed tissue toxicity or immune reactions in the treated mouse model.
Visit resourceProject Foresee overview and family campaign
The project’s history, scientific team, milestones, funding campaign, and goal of moving an AAV-based SH3TC2 gene therapy toward patients.
Visit resourceSH3TC2 gene replacement: foundational proof of concept
The 2023 study behind Project Foresee showed improvements after both early and later treatment in a CMT4C mouse model using AAV9 to deliver a working SH3TC2 gene to Schwann cells.
Visit resourceA second experimental path: NT-3 gene therapy
A separate 2024 preclinical study found functional, electrical, and tissue-level improvements after an AAV1 vector was used to produce neurotrophin-3 in a CMT4C mouse model.
Visit resourceSearch studies for Charcot-Marie-Tooth disease
The U.S. government registry for current, completed, and upcoming clinical studies. Check subtype and eligibility carefully.
Visit resourceGlobal Registry for Inherited Neuropathies (GRIN)
A patient registry that gathers lived-experience and genetic information to support research and trial readiness.
Visit resourceCMT research studies and clinical sites
A research network focused on different forms of CMT, with study listings, clinical sites, and patient-and-family information.
Visit resourceCommunity & finding help
Directories and support services that can help families locate knowledgeable clinicians and connect with the broader neuromuscular community.
Find help
Search CMTA Centers of Excellence, CMT clinicians, local branches, and support opportunities.
Visit resourceMDA Care Center Network
Search a national network of multidisciplinary neuromuscular care centers and connect with MDA support services.
Visit resourceFound something that belongs here?
As this community grows, we will keep reviewing the library, replace outdated links, and add resources that meet the same standard.
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