Living and Learning with Neuromuscular Disease
The medical science and the lived reality of neuromuscular disease.
Charcot-Marie-Tooth, without the pep talk. Diagnosis, pain, mobility, access, and the institutions that are supposed to help — written plainly, sourced carefully, for people tired of the same old story.
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Just Diagnosed, or Just Wondering
All Pain, No Gain — Use It and Lose It
Help Yourself — Nobody Else Cares
Most Recent
Sunlight on the CMTA: an ongoing series on how the American CMTA markets the disease and spends donor money. Read the series →
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What Happened to CMT2A1? KIF1B and the Disputed Rating
In October 2026 ClinGen’s Charcot-Marie-Tooth expert panel rated the KIF1B–CMT2A1 link “Disputed.” Here’s how that label arose, what the panel found, and how to interpret older references to…
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CMT and Nutrition: What the Evidence Says
What the research says about diet, weight and CMT, why the supplements tested in CMT failed, which ones can hurt nerves, and the rare neuropathies where diet really…
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One Patient, One Drug—and a Possible Voucher
A drug made for a single patient is one of the most hopeful ideas in rare disease medicine. Drug companies hope to profit from them, if public funding…
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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…
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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…
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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…
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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,…
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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…
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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…
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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…
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