CMT Awareness Month Challenge

I took a break from writing this blog, but since September is CMT Awareness Month, I felt I needed to step up and contribute something. We’ve all seen the ALS Awareness Bucket Campaign and how ALS successfully raised over $109 million, well now comes the CMT Awareness Challenge. You are 10 times more likely to know someone with CMT than you do with ALS. I’ve been nominated for this challenge to write 3 things that I am grateful for relating to CMT, over the next 5 days.

I believe the point is to help people understand what it’s like to have CMT, and let them know where they can donate to find a treatment to stop the progression.

Balloon Festival Glens Falls, NY photo by Melinda Lang

Balloon Festival Glens Falls, NY photo by Melinda Lang

First a brief explanation of what CMT is. CMT, or Charcot-Marie-Tooth disease, a genetic progressive nerve disorder, robs those affected of the normal use of their arms, legs, hands and feet. Nerve damage leads to muscle loss, which leads to falling, difficulty walking, weakness, fatigue, hands that won’t work. Other signs and symptoms include: numbness and tingling in extremities, pain, hammer toes, flat feet or high arches, or foot deformities requiring surgery, scoliosis, AFO’s, leg braces, canes, walkers, wheel chairs.

There are many types of CMT with different manifestations. In rare instances, some may include phrenic nerve involvement that can lead to breathing difficulties. And symptoms vary widely even among families. For example, I know of a daughter who runs marathons, while her brother uses a wheel chair and needs a ventilator to breath.

I don’t want to scare anyone, I also know CMT’ers in their 60’s, who are managing quite well. However, I am having trouble breathing; that’s why I mention it.

So, the challenge 3 things I am grateful for relating to my CMT:

  1. I am grateful for my husband and best friend, who continues to love & support me after 
almost 31 years

  2. I am grateful for my 2 kitties, who keep me active chasing after them, and flexible by picking up their toys

  3. I am very grateful that I can still get back up after I fall.

What are you grateful for? Take the CMT Awareness Challenge! It’s your turn to share with your friends and family.

Anyone wishing to donate to find a treatment to stop the progression of CMT may visit here:

For more ideas and to get your FREE survivor guide visit here:

This entry was posted in AFO, ALS, Awareness Month, Charcot-Marie-Tooth disease, CMT, CMT Awareness Month, CMTA, Fundraising, Health CMT, leg braces, neuromuscular disease, peripheral neuropathy, personal stories, phrenic nerve and tagged , , , , , , , , , , , , , , , , , , , , , , . Bookmark the permalink.

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