Hi! 👋
I’m Dan in Edmonton, Alberta, 🇨🇦 — originally from New York🗽 — and a middle-aged, lifelong endurer of a rare neuromuscular disease (NMD). My NMD was clinically diagnosed as Charcot-Marie Tooth (CMT) disease, but based on more recent genetic analysis, it does not map to any known type. My unique genome is available in open research databases now, so if anyone else turns up who has a match, maybe researchers will learn something.
Do you need help answering questions about CMT? 🤔
Do you have stories you want to share? Comments or corrections about stuff I’ve written?
Send me a note with the form below. 👇
You can learn more about CMT/NMD, my story, and what I’ve learned on the About CMT and this Blog pag as well as my blog posts.
Some good posts to start with:
- Crip Time, or “cripping”/thinking about time from a disability perspective.
- What happened when I gave ChatGPT all my medical test results and asked for diagnosis.
- SIIT and CMT — how sub-maximal intensity interval training can help people with neuromuscular disseases.
- All types of CMT are “Axonal” — the obsolete but still commonly used ways of diagnosing and classifying CMT have limited validity.
- The “First Treatable CMT Disease” is Neither CMT Nor a Disease — but the American CMT Association wants us to believe this represents an advance toward more CMT “cures.”
- Sleep Apnea and CMT
- CMT and Respiratory Dysfunction
- Disease, Depression, and Family Denial
I’ve met a few people and made some friends locally in Edmonton and around the province who have a neuromuscular disease or some type of neuropathy. Out of these conversations I’ve been able to create and share this list of CMT resources in Canada. I am always happy to share what I know, offer what support I can, answer any questions, or meet for coffee.
If you’re in the Calgary area, check out the Calgary Neuropathy Association (CNA). They’re really great people and have done a wonderful job with their organization.
⚠️ Warning about US-based CMT Charities:
The CMT Association (CMTA) and Hereditary Neuropathy Foundation (HNF) are American charities that dominate the web and social media for search related to CMT in North America. The CMTA even has a few Canadian chapters, but they are a US-based organization, not a Canadian charity. There is also an HNF Canada, which is separate from the US-based HNF but funnels Canadian donations to the US organization. In my view, Canadian dollars are better directed entirely to Canadian organizations like the Calgary Neuropathy Association (CNA), MD Canada, and neurological research at Canadian universities like the University of Alberta‘s Neuroscience and Mental Health Institute (NMHI), the Christine Webber Lab, and The Neuromuscular Disease Network for Canada (NMD4C). The Pain Society of Alberta is an excellent resource and organization worth supporting, thanks to their educational efforts and annual international conference. Learn more ›