There are many things we in the Charcot-Marie-Tooth (CMT) community mourn. Among them are old passions, activities we used to love, and dreams we might’ve realized had CMT symptoms not gotten in the way. But in speaking with other CMTers, one unfulfilled desire I often hear about is…

From switching out Facebook frames and viewing educational videos, to attending “band” exercise classes and rounding up purchases to the next dollar to benefit research and community programming, supporters are marking Charcot-Marie-Tooth (CMT) Awareness Month, observed every September. According to advocates, calling attention to the group of inherited peripheral…

For many years, my childhood bedroom featured a photo of Mr. McFeely, the friendly mailman from the beloved children’s television series “Mister Rogers’ Neighborhood.” It was as a souvenir from a meet and greet my family attended. While…

In April 1977 more than 100 people with disabilities entered the Department of Health, Education, and Welfare (HEW) office in San Francisco and, in protest, they refused to leave.  Three years prior, Congress had passed Section 504 of the Rehabilitation Act…

At my son’s Individualized Education Program meeting, the team asked what accommodations he requires due to Charcot-Marie-Tooth disease. He has little impact from CMT, with the biggest issue being motor dysgraphia. This is a learning disability that affects handwriting and fine motor skills. Our doctor…