Community

Find other people

People with CMT2C are warmly welcomed across the CMT community, and there is also a peer group just for TRPV4-related conditions.

• TRPV4 Related Hereditary Neuropathies (CMT2C, SPSMA & CDSMA). A Facebook group for people with TRPV4-related conditions and their families, where members share research news, meeting summaries and practical resources [105]. You may need to sign in to Facebook and ask to join. Stephanie Carmody started the group more than ten years ago, has led CMT2C education ever since, and is helping me build this site.
• CMTA Facebook groups. Five groups from the Charcot-Marie-Tooth Association (CMTA) that welcome people with every type of CMT, including CMT2C.
• Inspire CMT community. An online forum where people with CMT support each other.
• Hereditary Neuropathy Foundation (HNF) / CureCMT: CMT2C page. A dedicated CMT2C page with a clear, plain-language overview.
• CMT UK. A UK charity offering support and information.
• CMT Australia. An Australian association offering support, newsletters and a national conference.
• European CMT Federation. An umbrella group of national CMT organizations.

Read more about each of these organizations, and others, on Organizations supporting CMT.

Share your story: read stories from people living with CMT2C in Many voices, one community, and add your own by emailing me at cmt2cinfo@gmail.com. Tips are very welcome too.

How to take part in research

1. Confirm your genetic diagnosis. Trials recruit by subtype, so genetic confirmation is essential [53].
2. Join a natural history study. The Johns Hopkins TRPV4 study recruits people with a TRPV4 change, for now only in the United States and Canada [101]. INC 6601, the Inherited Neuropathy Consortium’s natural history study, is open to all CMT types [52]. If you join INC 6601 with a TRPV4 change, ask for the extra TRPV4-specific survey, because some clinics miss it.
3. Join patient registries.
   • CMTA Patients as Partners in Research offers early notification of clinical trials and invitations to surveys and focus groups [54].
   • GRIN, the Global Registry for Inherited Neuropathies run by HNF, is free, open worldwide, and collects genetic and survey-based natural history data [55].
4. Ask your neurologist or a CMT Center of Excellence about studies you may qualify for [53].
5. Search ClinicalTrials.gov, which the FDA recommends for finding trials [43].
6. Add your voice. The FDA holds patient-focused drug development meetings and patient listening sessions so that patients and caregivers can share their experience directly with the agency [90]. The CMTA has organized a private FDA Patient Listening Session for the CMT2C/TRPV4 community on 20 October 2026 [104]. Its speakers have already been chosen. To be invited to future sessions, surveys and focus groups, sign up for CMTA Patients as Partners in Research [54]. How to sign up.

More on the studies themselves is on the Trials and research page.

Meetings, webinars and recordings

• Global CMT Research Convention (CMTRF). A yearly meeting where scientists, clinicians and patients come together, with a day designed for patients that includes a clinical trial fair. The 2026 convention was held from 24 to 26 September in Cambridge, Massachusetts [116].
• CMTA Patient & Research Summit. The 2026 Summit was held from 9 to 11 October in Redwood City, California [113]. Check the CMTA site for future dates.
• CMTA Camp Footprint. A free, six-day sleepaway camp for young people aged 10 to 18 with CMT [112].
• CMTA conference recordings. Includes a 2024 session on CMT-related breathing issues and a 2023 session on genetic testing.
• HNF CMT-Connect webinars. General research and genetics webinars.
• “CMT2C/TRPV4 Meeting with Actio Biosciences” (YouTube). Recorded on 3 December 2025 and shared by the CMTA: a clinical trial update for the CMT2C/TRPV4 community from Actio Biosciences, leading CMT2C experts and the CMTA [103].
• “CMTA 2C & TRPV4 Patient Meeting | Dec 6, 2024” (YouTube). The CMTA’s meeting for the CMT2C/TRPV4 community a year earlier [293].
• Talks by Dr. Brett McCray (YouTube). The CMT Research Foundation has posted “CMT2C: Mutations in TRPV4” [291] and “Preparing for Clinical Trials in CMT2C” [292]. More recordings are in the Directory.
• CMTA breathing education. Guidance and a video on CMT-related breathing weakness [114].

Get in touch

I look forward to connecting with researchers, clinicians, and fellow families. Please feel free to reach out if you'd like to discuss TRPV4 biology, AI in research, or clinical trial access.

The quickest way to reach me is by email at cmt2cinfo@gmail.com.

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