News & Stories

See the latest news about CMT drug development and read stories from the CMT community that highlight why we must deliver treatments and cures during our lifetime.

Fatherhood and CMT: 10 Life Lessons from Dad

Jun 17, 2020 | Life with CMT

Fritz Schneider has worn many hats in his life. He has managed supermarkets, served as a deckhand on tugboats, owned a retail cleaning company, worked as a tour guide and even opened a neighborhood bar in his wife’s home country of Romania. Living with CMT is also on...

CMT Genetic Testing: What’s Involved?

Jun 16, 2020 | About CMT

During the past several decades, researchers have discovered more than 100 genetic mutations that cause CMT. In the same time frame, scientists have developed tests that can look at parts of someone’s genetic makeup and identify changes that could cause certain...

Understanding CMT Genetics

Jun 16, 2020 | About CMT

CMT is a genetic disorder, meaning it’s caused by a change, or mutation, in your genes. If you have CMT, you might be wondering how you got it. It’s likely that other people in your family have it, too — though this isn’t always the case. To understand how and why,...

College Graduate with CMT to Devote Career to Finding Cures

Jun 16, 2020 | Life with CMT

By: Allison Taylor I grew up in a small town in Texas, where everyone knew everything about everyone. Looking back on my childhood, I'm surprised at how well my mom kept our legacy of CMT hidden. With five generations of CMT in my family, I want to break that chain...

Three Reasons We Need Treatments for CMT

May 22, 2020 | Life with CMT

By: Allease Vickery I didn’t know CMT existed until I was diagnosed with it 11 years ago. As an adult, it was strange to learn I had a disease my family and I had never heard of, but it answered many questions about my childhood. Growing up, kids at school would...

A Brotherly Bond That Must Be Broken

May 21, 2020 | Life with CMT

By: Emma Evans As brothers, my teenage sons Alex and Jake share many things. Unfortunately, having CMT is one of them. Alex and Jake inherited CMT from their father. He was diagnosed at a young age but had no clue what type he had. When I met him, we didn't even know...

Losing My Daughter: What CMT Really Looks Like

May 7, 2020 | Life with CMT

By: Michelle Moon Before my daughter Julianna was born, I knew as much about CMT as the average neurologist, which is to say I knew very little. During residency, I met a patient with CMT who was a rock climber. His hand muscles were atrophied, but he spent his...

CMT Ends with Me: My Painful Decision Not to Become a Mother

May 7, 2020 | Life with CMT

By: Diane, living with CMT I’d give you my feet if I could. That’s what my strong, stoic mother told me as she struggled to watch me walk as a teenager. I was a natural athlete growing up. I loved running and excelled at it. One day while running, I blew out my...

No One Should Have to Choose Between Motherhood and CMT

May 6, 2020 | Life with CMT

I’ve had CMT my entire life. It runs on my dad’s side of the family. My parents knew I had CMT when I was born, but a genetic test confirmed it as a toddler. Early on, CMT affected me most by watching the effects it had on my dad, uncle and grandmother. The memory of...

Responding to the Pandemic with Persistence and Progress

May 1, 2020 | CMT Research Updates

By: Susan Ruediger, CEO, CMT Research Foundation Our lives have changed so much in just eight short weeks. As I’ve spoken with members of our CMT community, the fear and uncertainty we feel as people who are considered “vulnerable” are palatable. “It takes me twice as...