Every Voice Makes A Difference: Social Media Awareness For Charcot-Marie-Tooth Disease
it’s so important for you to join The Hereditary Neuropathy Foundation on all of our social media channels.
Learn more on this topic
Related Blog Posts
What It’s Like To Live With Charcot-Marie-Tooth Disease: The Stories Of Those Who Know It Best
The study is a collection of over 80 intimate and candid interviews, painting a vivid picture of those living with CMT. These interviews brought to light a range of different experiences: from devastating and heart-wrenching, to courageous and inspiring.
The Long Road to Diagnosis Renews Dedication to Advocacy
Growing up we called it “Steffi disorder.” My friends and family were as baffled as my expert neurologists. I had been diagnosed with typical Spiral Muscular Atrophy (SMA) as a toddler but never followed its progression; I never seemed to get weaker. My myriad of symptoms was distinctly different than anyone else’s I had ever met in a lifetime living in the neuromuscular community. I thought I might never find my true diagnosis, let alone others who share it with me.
Making a difference in the CMT Community
On May 3rd I will be in New York and participate in the TD Five Boro Bike Tour. I will be riding with Team CMT to raise awareness and help in finding a cure for CMT
Q & A with Andy Heck
Our Q&A for the Winter CMT Update is Andy Heck. Andy has been diagnosed with Charcot-Marie-Tooth since four and doesn’t let CMT stop him for living his life to the fullest!
Charcot-Marie-Tooth Frequently Asked Questions
Charcot-Marie-Tooth Frequently Asked Questions: Learn more about the most commonly inherited peripheral neuropathy affecting approximately 1 in 2500 adults.
Living with CMT: Key Topics
There are a number of adaptive aids that can help make everyday tasks easier. This section lists just a few of them. Some of these items can be adapted from materials at home, others must be purchased.
Embrace the Brace: A Mother’s Perspective on Helios
We had the highest of hopes that these custom braces would be the difference between night and day for Dakota.
From the words of a CMT Hero
“FAITH, LOVE AND HOPE KEEPS TIMMY DIXON GOING!”
I often wonder what it’s like to be like everyone else out there. How great it would be to do things most consider easily accessible and within reach. I believe in myself; it’s not really about that. Sometimes I just feel alone, cold, and bitter after considering life in general. Then I ponder a thought: there are too many hurdles I’ve already jumped over
One Woman’s Success with Surgery
Read about how this CMT patient endured seven surgeries over the past dozen years to cope with the effects of CMT.
0 Comments