In 2001, I was diagnosed with CMT after years of symptoms that had been noticed, questioned, and too often brushed aside. Foot deformities, difficulty with balance and walking, numbness, and sensory loss that did not have a clear explanation until suddenly it did. Getting the diagnosis was not devastating. It was clarifying. It put a name to everything that had been accumulating quietly for years and gave us a framework for understanding what was happening in my body and why.
What followed my diagnosis was another significant moment. My mom was tested after I received my results, and she was diagnosed as well. CMT is a hereditary condition, passed through families often without anyone realizing it is there until the pattern becomes undeniable. That is how it works for so many families. Generations of unexplained foot problems, balance issues, and nerve symptoms that get attributed to aging or clumsiness or bad luck, until one diagnosis pulls the thread and everything comes into focus.
Charcot-Marie-Tooth disease is the most common inherited neurological disorder, affecting an estimated 2.6 million people worldwide. It affects the peripheral nerves, gradually reducing the ability to feel sensation and control muscle movement, particularly in the feet, legs, hands, and arms. There is currently no cure.
My journey with CMT led me here, to complex foot and ankle reconstruction surgery in 2026, a path that has been years in the making. My mom walks her own version of this same road. We are not alone in that, but far too many people with CMT are still waiting for a diagnosis, still being dismissed, and still living without the research funding that could change what this disease means for the next generation.
That is why this donation link exists. Every dollar contributed to CMT research moves us closer to better treatments, earlier diagnosis, and one day a cure. If our story resonates with you, please consider giving. It matters more than you know.