Apart from two CMTA chapters in Ontario (for Toronto and Southern ON), the CMTA is an entirely US-based organization, and there is nothing like it in Canada. Today, the most organized expression of the Canadian CMT community is thanks to accessibility advocate and Order of Canada member Linda Crabtree‘s CMT Canada group on Facebook.
It may not be much, but that’s us.
You may not know Linda ran an international CMT newsletter for nearly two decades — mostly before the CMTA and the internet existed or had much momentum. (Non-electronic mail was used, but I can’t imagine Canada Post was slower in those days.) I think some of Linda’s old material is on her blog, which is written from a Canadian perspective of course. She has a lot of amazing stories, and I look forward to reading her CMT and Me autobiography, which I finally got around to ordering today as I was writing this post.
Then there’s the Hereditary Neuropathy Foundation’s CMT community site and forum where you can search out people who have shared their location.
Like the CMTA, the HNF is an American organization, but there is a related, Vancouver-based entity, HNF Canada, whose website I stumbled upon once. The HNF’s founder, Allison Moore, told me “HNF Canada is a tax-exempt organization to raise funds for research. It was started by a family in Vancouver, and usually the funds HNF Canada raises are directed to the US-based HNF’s research university partners or a specific CMT research project that supports transnational therapies for CMT.”
That’s great, but sadly there is not much CMT-focused research in Canada or anything like “CMT Centers of Excellence,” although these have spread now to three European countries as well as Australia.
(The CMTA does list one University of Calgary researcher/research group. I haven’t reached out to them yet, but if/when I do, I’ll share what I learn here.)
Don’t overlook CMT-adjacent organizations, however. They often have the value of focusing on practical matters that can help you today. The CMT-focused organizations are typically focused on fundraising to support research for cures and treatments that may or may not emerge in the future.
The Calgary Neuropathy Association (CNA) is the only support organization I know of in Canada for CMTers and other types of neuropathy. Absolutely nothing else in the prairie provinces. 😔
Muscular Dystrophy Canada may step into that gap a little more over time.
I started this blog to help anyone dealing with CMT but also in the hope of reaching Canadian and Albertan residents who might be looking for local or regional support. If you are in the Edmonton area and interested in having a meetup — or just passing through and have time for coffee, do get in touch!