News and 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.

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.

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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.

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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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Caring for Someone with CMT: 3 Tips for CMT Caregivers

With no treatments or cures currently available for people with Charcot-Marie-Tooth disease, caring for someone with CMT may feel daunting. As a dad of a daughter with CMT and a friend to many with the disease, I know first-hand how physically and mentally challenging living with the disease can be. Here are three ways to help someone with Charcot-Marie-Tooth and be a supportive CMT caregiver.

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CMT Research Foundation Launches Groundbreaking Research to Overcome Barriers to Delivering CMT Therapies to the Peripheral Nervous System

The CMT Research Foundation has launched a groundbreaking new research collaboration today with James Dahlman, Ph.D., assistant professor in the Wallace H. Coulter Department of Biomedical Engineering at the Georgia Institute of Technology and Emory School of Medicine. This innovative partnership seeks to overcome the challenges in CMT drug delivery by using lipid nanoparticles (LNPs) to deliver therapies to the PNS that could slow, stop or even reverse the effects of CMT in patients.

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Dr. Bruce D. Carter Joins Scientific Advisory Board to Help CMT Research Foundation Deliver Treatments and Cures

Bruce D. Carter, Ph.D., has joined the CMT Research Foundation’s Scientific Advisory Board to help guide research strategy and funding to deliver treatments and cures for CMT. Dr. Carter is a professor of biochemistry and the associate director of the Brain Institute at Vanderbilt University. Read more about why he’s passionate about ending CMT and how he’ll be helping the CMT Research Foundation in its quest to do that.

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Peter J. deSilva Joins CMT Research Foundation Board of Directors to Help Speed Treatments & Cures

The CMT Research Foundation is pleased to welcome Peter J. deSilva as the newest member of our board of directors. With more than 30 years of experience as a results-oriented leader in the financial sector, Mr. deSilva will bring his world-class expertise in strategic development and financial management to help the CMT Research Foundation raise significant funds for cutting-edge research and scientific innovation. Read more.

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