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.
Shayla Hammock, living with CMT1A
I inherited CMT1A through my family, although I was unaware of what was affecting me until I was seven years old. As a baby, I was unable to lift my head at the same time as my peers and it took me a little longer to learn to walk. In fact, it seemed like every stage...
Living with Muscle Weakness is Not Rare to Me
Krista Allison, living with CMT4J I was born with Charcot-Marie-Tooth disease (CMT) and my symptoms started to appear about 12-months-old when I began to learn to walk. Since the age of 15, I have had roughly 12 foot surgeries to correct foot abnormalities, although I...
Changing One Family’s Legacy
As with many families, I am but one leaf in a family tree colored by CMT1A across its many limbs and branches. I have watched successive generations struggle with the disease’s progressively debilitating physical symptoms and persistent emotional toll: grandparents,...
CMT Research Foundation partners with Biotechnology Company AcuraStem and CMT Researcher Alessandra Bolino to test new drug in CMT4B1
The CMT Research Foundation is proud to announce our latest project, a partnership between AcuraStem, a patient-based drug discovery platform company, and Dr. Alessandra Bolino, a renowned expert in CMT and the head of the Human Inherited Neuropathies Unit at the...
Understanding Neurons and the Myelin Sheath in Charcot-Marie-Tooth Disease
By Keith Fargo, Ph.D., Chief Scientific Officer, CMT Research Foundation Charcot-Marie-Tooth disease, or CMT, is a disease in which the peripheral nerves that branch out from the brain and spinal cord to other parts of the body, like our hands and feet, don’t work...
Be the Change We Wish to See: Join the Spring CMT Research Challenge
Tired of living with a disease that has no treatments and cures, Chelsea Layton and her fellow CMT Research Foundation volunteer ambassadors created the Spring CMT Research Challenge to rally the CMT community to help speed drug development and answers. Learn more and join the challenge.
7 Ideas for Personal Fundraising Success
CMT patient Chelsea Layton shares her tips and ideas for starting a personal fundraiser.
Losing My Independence is Not Rare to Me
When I was diagnosed with CMT at age 2, it wasn’t a surprise to anyone. I was the seventh person in my family to be born with the disease. Although we were familiar with CMT, we couldn’t understand why the disease was progressing faster in me than anyone else in our family. Read Monica’s story.
Living in Pain Every Day is Not Rare to Me
The day after my 29th birthday, I received confirmation that the intense pain I’d been experiencing all my life was most certainly not in my head. It was Charcot-Marie-Tooth 1X. During the first year after my diagnosis, I fell into a deep depression. My family had a hard time accepting this diagnosis. Telling my story has changed my life, and I’m determined to change the future. Read more.
Worrying About My Daughter’s Future is Not Rare to Me
CMT may be a rare disease, but it is anything but rare to me. The most challenging part of living with CMT is the emotional toll it takes. I often think about the significant moments of my life that are yet to come: Will I be able to take my daughter to a father-daughter dance? Will I still be able to walk her down the aisle when she gets married? Read more.
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