Charcot-Marie-Tooth (CMT) is a disease of the peripheral nervous system, meaning it can affect the majority of my body. Over time, these nerves degenerate, weaken, and die, leaving my body without the ability to communicate with and control my muscles. This is a progressive disease, so it will only get worse.

Symptoms of CMT typically include weakened hands and feet, poor balance and proprioception, tremors, clawing of the hands and feet, and nerve pain. On the surface, this list might seem like minor symptoms; symptoms that might be an annoyance instead of a daily impact...

But let me paint a picture of CMT for you.

Your ankles are so weak that you can't walk on uneven ground. You have to look down all the time to make sure that you don't miss-step and injure yourself. Every time you approach a set of stairs, you have to think about which foot you're leading with, basically pulling yourself along with the handrail - if you're like me, you can't walk downstairs and you have to walk them sideways. You take notes at school or work, maybe you are writing your grandmother a card, but two sentences in you get a tremor in your hand, and your hand cramps to a clawed position for the next hour. Your feet are so arched and clubbed that finding shoes that fit are near impossible, and finding ones that are comfortable is even worse. You'd like to run errands alone with your baby, but the fear of falling and dropping her in the parking lot is too great. You break a bone that should take 6 weeks to recover, but instead it takes you 6 months. During that 6 months, you've lost your career, your social life, and a huge majority of the muscle mass in your body. Time goes on, your body deteriorates, and then your respiratory muscles start to weaken; even breathing is a large task with CMT.

And these are just examples of the physical impact of CMT. The mental and emotional toll of this disease is discussed even less, but potentially has more of an impact than the physical symptoms.

I would love to teach you more about this condition and the research that is being done to treat it. The future is bright for CMT treatments, but we can only get to that horizon with help and support from our communities.

Help me end CMT - for myself, my family, my friends, and future generations.