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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Three ways in, depending on what you're looking for, how you feel, and what your feet look like. 🦶
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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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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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 part-owned by one of its own directors, built from donations earmarked for it.…
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Who Is Behind the CMTA?
In 2025, half the money the CMTA granted for US research went to projects led by its own advisers, or to a company one of them helps run.…
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The Sloth’s Taxonomy: A Review of “Experts in CMT”
Experts in CMT stretches a contested CMT taxonomy wider, brands its uncredentialled author an expert, and cites his employer, the CMTA, without disclosing it as such.
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Barbies and Warriors: How the CMTA Sells CMT
“CMT Barbie,” “CMT warriors,” a CBD sponsor, an Amazon store with a commission, and an unproven oxygen therapy that can cost thousands. A close look at how the…
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Three “Treatable CMT” Stories, and What the Market Taught Us
Three heavily publicized CMT treatments of 2019–2023 (govorestat, PXT3003 and Engensis) all ended without a CMT approval, and the way they ended says a lot about how drug…
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How the CMTA Mishandles Moderation and Its Facebook Community
A CMTA Facebook moderator I’d blocked got me removed from the group, with no appeal. For years after promising in writing to delete my records, the CMTA kept…
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Kahtulas
I’ve had these broken Kahtoola links on my desk since the last winter I did a lot of walking.
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The Hope Mission
Like many cities, every day in Edmonton offers a direct view into an ongoing public health crisis, where many layers of disability and need are on display.
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Diagnostic Pathways for Idiopathic Neuropathy
“You have a serious illness of an undisclosed nature.”
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