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...

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, Press Releases

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...

New Research Project to Advance Treatments for CMT1B

Apr 29, 2020 | CMT Research Updates, CMTRF Funded Research, Drug Development, Research News

The CMT Research Foundation is pleased to announce a new partnership with The Jackson Laboratory that will help us better understand CMT1B and potentially lead to the discovery of treatments. CMT1B is the third most common form of CMT. It’s caused by a defect in the...