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
Exposing the CMTA: an ongoing series on how the American CMTA markets the disease and spends donor money. Read the series →
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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 controlled by one of its own directors, built from donations earmarked for it. The audit…
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Who Is Behind the CMTA?
The people deciding who gets the CMTA’s research money are largely the people getting it. A look at the charity’s staff, boards, tax returns and grants, from its…
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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. An exposé of how the US-based…
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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. Years later, the CMTA still emails me after promising in writing to delete…
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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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Diagnostic Pathways for Idiopathic Neuropathy
“You have a serious illness of an undisclosed nature.”
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CIDP and CMT
CIDP and CMT can be mistaken for each other, especially demyelinating CMT1. How often misdiagnosis happens, and why it matters since CIDP is treatable.
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There is no such thing as standing, there is only being held up.
A passage from Franz Rosenzweig’s letter to his sister on why no one can save themselves, and how each of us is held up by the hands of…
Most Read
Physical Assessments for CMT
The Sloth’s Taxonomy: A Review of “Experts in CMT”
Should I play the didgeridoo (or harmonica) to fight sleep apnea‽
CMT Research and Support Organizations in Canada that are Actually Canadian
CMT, Depression, and Anxiety
A New Genetic Cause of a Previously Unknown Subtype of CMT2
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