Charcot-Marie-Tooth (CMT) disease is a hereditary neuropathy that exists in many forms, some more severe than others. That means it is inherited from a parent and causes damage to the peripheral nerves — the nerves outside the brain and spinal cord — and some patients can have it much worse than others. Patients often experience progressive muscle weakness, especially in the hands and feet, slowed nerve conduction, balance issues, frequent tripping, fatigue, and a wide range of other symptoms that can worsen over time.

To put that into context, most patients with CMT will never be able to physically keep up with peers past early childhood. As they age, they will struggle to do many things autonomously, such as open jars, ride bikes, write, exercise, hike, climb stairs, raise children, and even work jobs. For some patients with more severe versions of CMT, they will even struggle to walk altogether, dress themselves, cook, clean, and perform other.

The symptoms of CMT exist on a spectrum, and sometimes a parent can live decades of their life without even realizing they have it, then unknowingly pass it down to their children, who develop much worse symptoms. And in some cases, CMT can even arise from spontaneous genetic mutations during early development without being inherited from either parent at all. This is known as a “de novo” mutation, meaning “new.”

Although considered a rare disease, approximately 1 in 2,500 people are born with CMT. And when you include the families, friends, and loved ones impacted alongside them, the number of lives affected becomes far greater.