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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
Archived: these events have passed. This post is from October 2022; the CMTA’s conference recordings page now lists more recent summits. The 2022 CMT Patient and Research Summit has all its session recordings online now. These are mostly research-oriented, but not all. It’s good to see a few sessions on therapy and things you can…
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CMTA Toronto Upcoming Events • CMT Awareness Month • Learning to slow down and attend to your needs • Existential anxiety
Archived: this event has passed. The CMTA no longer lists a Toronto chapter; its branch directory now lists Eastern Canada and Western Canada branches. The Toronto chapter of the CMTA has regular meetings and events that can be joined remotely with Zoom. On Saturday, September 24 from 1-3pm EDT their guest speaker will be Shannon…
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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-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,…
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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