2026
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Who Writes the Rules for CMT Drug Trials?
The first framework for CMT drug trials was written by patient charities, clinicians and drug companies, two of them companies the CMTA has money in. The published paper carries no public conflict-of-interest statement.
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Canada’s CMT1A Research Partnership: Who Funds It, and Who Gets the Rights?
The NRC, CMTA, and Shark Tooth Biotech are pursuing an experimental CMT1A delivery approach. Disclosed investments raise questions about research contributions, commercial rights and benefits for Canada. The partners’ responses and the unanswered questions are set out here.
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Who Decides What Counts as CMT?
No single body owns the word CMT. Here is where the edge cases sit, who decides, how they decide, and how cmt.blog handles it.
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Faster, Less Predictable: What the FDA’s Turbulent Years Mean for CMT
The FDA has promised faster, more flexible rare disease approvals, but rejections, reversals, leadership churn, and pressure on research funding have made it less predictable. What that means for CMT patients and researchers.
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Plain-Language Research Summary: A Blood Test for Nerve-Fibre Loss in CMT
A 2025 study found the nerve-damage protein NfL more than twice as high in the blood of people with CMT, and loosely linked to severity. What it shows, what it can’t, and how it fits with earlier studies.
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Name Games: Why CMT Type Names Are a Mess, and How to Find Reliable Information
CMT’s type names grew out of nerve tests and a run of lettered genes. They no longer line up. Here is how the naming got this messy, where it is heading, and which sources to trust.
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Coming Up on CMT Blog: Fall 2026 to Spring 2027
What I’m working on for the next six months: more Sunlight on the CMTA, research and trial explainers, Canadian access guides, and monthly gene table releases.
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Trial Watch #1: CMT Clinical Trials, October 2026
The first Trial Watch: the CMT drug trials underway or changed since 2024, from a Novartis CMT1A study recruiting only in Canada to a cancelled govorestat trial, with a plain-English note on each.
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Introducing the Open CMT Gene Table
CMT’s gene and subtype names don’t line up, and I haven’t found an open table that sorts them out. So I made one: 70 genes, their old and new names, and how strong the evidence is for each, free to download.
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An Open Invitation to CMT and Disability Voices on Bluesky: Please Bridge to the Fediverse
The people CMTers most need to hear from are on Bluesky but invisible to the fediverse. One follow fixes that. Here’s why it matters, and who I’m asking.
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Alice Wong: Our Stories Belong to Us
Alice Wong, who had SMA, built the Disability Visibility Project and #CripTheVote so disabled people could tell their own stories. Why it matters for CMT.
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Shark Tooth: The CMTA’s Stake in a Board Member’s Biotech
In 2025 the CMTA held a $248,763 stake in a for-profit CMT1A company founded and owned by one of its own directors, built from donations earmarked for it. The audit says that director recused himself. A policy for its grant advisers leaves other conflicts to the chief executive.