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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 says that director recused himself. Nothing explains the rest.
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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 own pages and IRS filings.
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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 CMTA markets CMT, in its own words.
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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 my records. Here’s the story, and what Canadian and US anti-spam and privacy laws say about it.
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CMT Research and Support Organizations in Canada that are Actually Canadian
The CMT-related organization you’re most likely to find online even if you’re in Canada is American: the CMTA. It is an entirely US-based organization that has historically taken donor dollars out of Canada and, until very recently, put little of it back into Canadian research and support for neuromuscular diseases. Looking for clinics, equipment funding,…
Exposing the CMTA
An ongoing series examining the US-based Charcot-Marie-Tooth Association (CMTA): how it markets CMT, who decides where donor money goes, and what it leaves out. Disclosure: In 2021 I wrote two guest articles for the Hereditary Neuropathy Foundation’s website and printed magazine, which does not reflect a bias in favour of the HNF. I’ve been critical of both US-based charities.