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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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The “First Treatable CMT Disease” is Neither CMT Nor a Disease
CMT-related research may truly do away with CMT disease first by eliminating or updating how naming and classification works in neurological pathology.
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Conference Videos Worth Watching
Session recordings from the CMTA’s 2022 CMT Patient and Research Summit, mostly on research, with a few on therapy and self-care. The events have passed.
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CMTA Toronto Upcoming Events • CMT Awareness Month • Learning to slow down and attend to your needs • Existential anxiety
Archived 2022 events from the CMTA’s former Toronto chapter, plus notes on CMT Awareness Month, slowing down, your needs and existential anxiety.
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Disease, Depression, and Family Denial
CMT and other hideable/hidden diseases may often be denied by the people closest to you — a potentially devastating, psychologically defeating, and depressing, gaslit reality that is toxic and abusive.
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New Canadian CMT Resources
At some point I’d like to create a page of CMT resources in Canada just to present that all in one place. If you have anything or anyone you think should be on the list, please let me know! 📣
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A New Genetic Cause of a Previously Unknown Subtype of CMT2
Published in Nature Genetics last month, the INC group’s findings are a big deal, and there is a really cool story from the University of Miami’s Miller School of Medicine about how the research team came together.
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CMT Research and Support Organizations in Canada that are Actually Canadian
The CMT group most Canadians find online is the US-based CMTA. Here are CMT research and support organizations and resources that are actually Canadian.
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Late Diagnoses
In the past the norm was we didn’t get a diagnosis, so family and friends just shrugged it off and called us “clumsy” or pretended nothing was wrong. I hope this is an outlier experience, but I was pushed into sports, like track and cross country, in high school when my feet and ankles became…
CMTA
The Charcot–Marie–Tooth Association (CMTA) is a US-based nonprofit charity that funds CMT research, including the Inherited Neuropathy Consortium. See also the Exposing the CMTA series. More in the glossary