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.
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.
WATCH: When Can Patients Expect Treatments for CMT?
In this first episode of the CMT Research Foundation’s new video series that asks and answers the toughest questions about CMT treatments, leading research experts will have you on the edge of your seat as they share when patients can expect treatments for CMT and how they can participate in accelerating progress.
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.
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...
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...