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.

Reflections on a CMT Research Supporter

Jul 7, 2020 | Life with CMT

By Patrick Livney, Chairman of the Board Recently, I was contacted by Barton, a son of Charles G. Bentzin, who informed me of the passing of his father. Sadness aside, his reaching out touched me on two fronts. First, telling me how Charles “enjoyed talking with you...

DTx Pharma Achieves Second Milestone in Study to Advance Treatments for CMT1A

Jun 26, 2020 | CMT Research Updates, CMTRF Funded Research, Drug Development, Research News

The CMT Research Foundation is pleased to announce that our partner DTx Pharma just completed the second milestone in a study we’re funding which uses their proprietary technology to suppress the overexpression of PMP22, the protein that causes CMT1A. Their work has...

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...