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.

CMT Research Foundation Adds New Chief Operating Officer and Chief Scientific Officer

Aug 17, 2020 | Press Releases

Meet the CMT Research Foundation’s new Chief Operating Officer Erich Fasnacht. See how he plans to increase the number and scale of CMT research projects.

Meet the CMT Research Foundation’s New Chief Operating Officer Erich Fasnacht

Jul 30, 2020 | Press Releases

Meet the CMT Research Foundation’s new Chief Operating Officer Erich Fasnacht. See how he plans to increase the number and scale of CMT research projects.

A rallying cry for the CMT community: If not us, then who? If not now, then when?

Jul 20, 2020 | Life with CMT

By: Gary Donaldson The New York Times recently published an article about individuals living with rare genetic diseases who have become advocates for their conditions. These courageous champions are shaping research to change the course of their disease, despite the...

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...

Nothing Stops Innovation: Results from BIO 2020

Jun 24, 2020 | CMT Research Updates, Drug Development, Press Releases

By: Susan Ruediger, CEO, CMT Research Foundation “We’re not currently working in CMT, but we know we should be.” “We think our drug could work for CMT, but it has never been tested.” “CMT is definitely on our interest list for expansion, but we need to learn more...

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...