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
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
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
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.
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.
Meet the CMT Research Foundation’s New Chief Operating Officer Erich Fasnacht
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?
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...
Nothing Mild About CMT
By: Susan Ruediger, CEO, CMT Research Foundation When I talk to individuals with CMT or share my personal experience about living with the disease, the responses I hear can be heartbreaking, sometimes even infuriating. “At least you don’t have cancer.” “You don’t look...
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...
Nothing Stops Innovation: Results from BIO 2020
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...