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 Announces New Research to Study Inflammation as Potential Treatment Target for Charcot-Marie-Tooth Disease
The CMT Research Foundation is proud to announce a new research collaboration with renowned nerve disease expert Dr. Rudolf Martini of University Hospital Würzburg to investigate whether inhibiting inflammation in the peripheral nerves could reduce symptoms and improve outcomes for patients with Charcot-Marie-Tooth disease Type 1B. Read more about this project and see the four stages in the project.
CMT Research Foundation Partner DTx Pharma Wins Grant from National Institutes of Health for CMT1A Gene Therapy Program
CMT Research Foundation partner DTx Pharma, Inc., has won a grant from the National Institutes of Health (NIH) to further fund its work on CMT. The investment is significant because the CMT Research Foundation gave DTx its first CMT-related grant just nine months ago....
A Family’s Fight to Change Their Daughter’s Future
Eight-year-old Leonor struggles to walk, sit up straight and hold a glass of water. Other kids make fun of her because she has to wear leg braces. When Leonor was diagnosed with CMT, doctors said she’d ben in a wheelchair for life. Her family refuses to accept that fate, and so do we. There’s always something we can do. Learn how you can take action to end CMT.
How Breakthroughs in Other Diseases Can Impact CMT
Unlike other neuromuscular diseases, CMT patients have no approved treatments. See how we’re applying breakthroughs in SMA to advance CMT drug development.
A rallying cry for the CMT community: If not us, then who? If not now, then when?
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
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
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
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
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
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...