Stories from People Living With CMT1E

One Woman’s Story

In 2006, I was diagnosed with CMT.  Back then, I was playing field hockey and living a normal life.  An athletic trainer who had taught my family called my mom, said something was off, and after genetic testing, we learned she was very very right.  It wasn’t for many years later that I would get the 1E diagnosis.  1E is not well-known by clinicians; we’re often diagnosed as 1A.  Once I started going to an INC doctor though, I was able to really be placed.  Hearing I was rare among a rare disease wasn’t what I wanted, but here we are.  If you have CMT 1E, we want you to join our small but fierce group of individuals working tirelessly for a cure. We’re going to do it. Join us.

I’ve said it before and I’ll say it again- this disease stinks.  I fall often – and not like an everyday trip, I face plant.  I’m a 30 something professional with scraped knees, bruised elbows and a tarnished ego.  At a choreographed dance in high school, in front of 1,000+ guests, I fell squarely on the ground.  Not once but twice. 


I know the ground well.  I skip stairs – when I come across them, all I see is Mount Everest.  I see this thing I cannot fathom climbing. Right now, there is no end in sight.  I’ll keep getting worse and worse.  For a long time, I hid my braces and wore them sparingly.  Now I wear them all the time and show them off!  However, they aren’t really a magic bullet and can’t keep up with my atrophy.  I don’t know where I’d be without them though!  I’m too stubborn to switch to a wheelchair and rely on the goodness of family, friends, and strangers to get me from tricky spot A to tricky spot B.

BUT you wouldn’t believe the research and the brains behind this disease.  The CMT Research Foundation, with the help of brilliant scientists and pharma companies, is working tirelessly to find a cure for us.  A cure is coming and we want you part of it.

Please reach out if you are interested in chatting or learning about what we are up to. [email protected]


​To be the first to hear about CMT research updates, new projects and progress and how you can get involved to accelerate drug development, sign up for our email list.


4062 Peachtree Road
Suite A209
Atlanta, GA 30319

Phone Number


Media Inquiries

George Simpson


[email protected]