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.
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?
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.
Two blogs about CMT I found recently: the MFN2 Project and Help Chronic Pain in Alberta.
Many people with CMT report having problems with breathing.
The Rare Diseases Network is looking for participants in a new study looking for unknown causes of the most common types of CMT.
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.
There are not a lot of Canadian groups and resources organized for people with CMT. How can we build this community?
The Inherited Neuropathy Consortium (INC) is asking for CMTers with a COVID diagnosis to take an anonymous questionnaire.
A few weekends ago, I listened to the HNF webinar on COVID-19 and CMT with Dr. John Bach of Rutgers University Medical School, a leader in the field of pulmonary rehabilitation, particularly for people with neuromuscular diseases. You can watch it and get a bunch of other materials now — for free — thanks to the HNF.
By far the best thing to do to build mitochondria from an exercise perspective is something called Sub-maximal Intensity Interval Training (SIIT).
Here’s my list of immune boosters and ear-nose-throat (ENT) soothers and cleansers — good in every flu and cold season for prevention and healing.