About CMT Together
CMT Together began with our son, Jack.
After years of unexplained toe walking, braces, surgery, balance problems, falls, and questions, genetic testing finally gave our family an answer: Jack has CMT4C, a rare form of Charcot-Marie-Tooth disease.
That diagnosis sent us looking for everything we could find—clear information, trustworthy research, practical resources, and other families who understood what living with CMT can actually look like. CMT Together grew out of that search.
We’re Jeff and Janica DeJuncker, Jack’s parents.
We created this project to share what our family is learning and experiencing, point people toward reliable information and research, make useful resources easier to find, and help families and adults affected by CMT find one another.
CMT4C will always have a special place here because it is Jack’s diagnosis and the reason this project exists. But CMT Together has grown to welcome people affected by every type of CMT. Different subtypes and different stages can bring different challenges, but no one should have to navigate them alone.
We are not a medical institution, and we do not have every answer. We are a family learning as we go—sharing lived experience, following the research, listening to others in the CMT community, and trying to make the path a little easier to navigate for whoever comes next.