Canada
CMT research, organizations, health care and supports in Canada, with a focus on Alberta and Edmonton.
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Canada’s CMT1A Research Partnership: Who Funds It, and Who Gets the Rights?
The NRC, CMTA, and Shark Tooth Biotech are pursuing an experimental CMT1A delivery approach. Disclosed investments raise questions about research contributions, commercial rights and benefits for Canada. The partners’ responses and the unanswered questions are set out here.
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Trial Watch #1: CMT Clinical Trials, October 2026
The first Trial Watch: the CMT drug trials underway or changed since 2024, from a Novartis CMT1A study recruiting only in Canada to a cancelled govorestat trial, with a plain-English note on each.
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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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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 “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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Fuck Pain! And People Who Don’t Get It
Some medical facts and advice about pain — and then some straight talk about the question pain makes more acute: why live at all?
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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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Walk4CMT is coming up on September 18!
I will be walking as far as I comfortably can in Muscular Dystrophy Canada’s Virtual Walk4CMT on Saturday, September 18 — which is somewhere north of 20km at which point the numbness setting it around 10km usually gets into a little more active pain, thanks of course to the effects of a relatively mild case…
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BILLYs
Thick sole, wide toe box, big ankle support, and the upper unzips to fold open for easy access and orthotic insertion. What’s not to like about BILLYs?
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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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CMT Blogs of Note
A refreshed directory of independent CMT, neuromuscular, chronic-pain, and disability-justice blogs and newsletters, checked October 2026.
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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.