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 Patients & Families Need More Than Awareness

Aug 25, 2020 | Life with CMT, News

It has been more than 130 years since CMT was first discovered, yet there are still no treatments or cures. This CMT Awareness Month, we need more than awareness. We need action. Here’s what we can do together to move the needle now.

5 Ways CMT Patients Can Take Action to Accelerate Drug Development

Aug 24, 2020 | Drug Development, Life with CMT, News

Unlike other neuromuscular diseases, CMT patients have no approved treatments. See how we’re applying breakthroughs in SMA to advance CMT drug development.

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

Aug 17, 2020 | News, 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...

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...