CMT Blog

CMT Blog

Living and Learning with Charcot Marie Tooth Disease.

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  • Walk4CMT 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 of CMT2. To make it perhaps extra challenging, I’ll be four days off the ol’ snip and tuck, but I hope it really will make no vas deferens. 😆 If you already donated, thank you! I am still $45 under my goal of raising $1000, so there is room for more donors.

    Dan

    August 15, 2021
    Awareness, News
    Cycle4CMT, Muscular Dystrophy Canada, Walk4CMT
  • 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?

    Dan

    August 15, 2021
    Supports
    Billys, shoes
  • The first treatable form of CMT?

    I wrote this brief article on the way the SORD gene works (or fails to work) for the Hereditary Neuropathy Foundation. SORD mutations cause “the most common autosomal recessive form of CMT2 (CMT2A1), autosomal recessive intermediate CMT (CMTRIA), and the overlapping category of distal hereditary motor neuropathy (dHMN).”

    Dan Knauss

    March 18, 2021
    News, Research, Therapy
    CMT2, CMT2A1, CMTRIA, CMTX, sorbitol dehydrogenase
  • All types of CMT are “Axonal”

    CMT1 types have commonly been referred to as “demyelinating” and CMT2 as “axonal,” which gives the impression the nature of the nerve damage between the two is fundamentally different.

    Dan Knauss

    March 14, 2021
    Awareness, Research
    CMT1, CMT2, Diagnosis
  • 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! 📣

    Dan Knauss

    March 14, 2021
    News
    Canada, CMTA, COVID-19, MDC, NMD4C
  • The Problem with Writing about CMT

    I’ve been increasingly irritated lately by US-based CMT-related non-profit organizations that seem to compete with each other for donations — supposedly they drive research for “treatments and cures.” How well they actually do this relative to the padding of their own budgets is a good question I might take up down the line, but you would think they might at least put some effort into writing plain-English summaries of technical material (medical and scientific research) in ways that educate and inform regular people. But no.

    Dan Knauss

    January 1, 2021
    Awareness, Research, Therapy
    aldose reductase inhibitors, Axon, CMT2, D-sorbitol, diabetes, Douglas Zochodne, Epalrestat, hHMN, Sorbinil, sorbitol dehydrogenase, SORD, Stephan Züchner
  • Maybe it will work on CMT..?

    It seems the new hope for VM202 as a CMT1a treatment is perhaps Hellxmith’s latest attempt to find a market for an experimental product that has not panned out as hoped.

    Dan

    July 27, 2020
    News, Research
    ALS, arterial disease, clinical trials, CMT1A, diabetes, gene therapy, genetics, Helixmith, HGF, Lyrica, paracrine signalling, plasmid, VM202
  • CMT Blogs of Note

    Two blogs about CMT I found recently: the MFN2 Project and Help Chronic Pain in Alberta.

    Dan

    July 11, 2020
    Awareness, People, Research
    MFN2
  • CMT’s Impact on Respiration

    Many people with CMT report having problems with breathing.

    Dan

    July 11, 2020
    Awareness
    Breathing, Respiration, Respiratory Health
  • New Study of Genetic Causes of CMT Needs Participants

    The Rare Diseases Network is looking for participants in a new study looking for unknown causes of the most common types of CMT.

    Dan

    June 9, 2020
    Research
    CMT1, CMT2, genetics, Inherited Neuropathy Consortium
  • New discovery of a genetic cause (and likely cure) for 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.

    Dan

    June 9, 2020
    News, People, Research, Therapy
    AOINC, CMT-net, CMT2, CMTA, D-sorbitol, HNF, INC, RDCRN, SORD, Stephan Züchner, UDN
  • CMT in Canada

    There are not a lot of Canadian groups and resources organized for people with CMT. How can we build this community?

    Dan

    June 2, 2020
    Awareness, People
    CMTA, CNA, HNF, HNF Canada
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