Mighty Member since February 2018
When our son was diagnosed with Charcot-Marie-Tooth (CMT) disease at age 7, our lives turned upside down. Known as a heritable condition, our son, Yohan, was the first in our family to have this disease, which is usually passed on from parent to child. With the help of friends, family, and others with CMT, we moved forward and got integrally involved with the Charcot-Marie-Tooth Association (CMTA) to make an impact in our child's life and the lives of the 2.8 million people worldwide. My husband and I are both intimately involved with the CMTA community, raising awareness, working with scientists for long-awaited treatments, and helping others cope and manage the devastating effects of this progressive disease. I started a blog: True Stories About Living With CMT and Other Relevant, But Unrelated Tales (https://bestfoot4wardblog.com/) to chronicle our experiences with this devastating disorder. As much as possible, I keep the focus on upbeat and funny stories and hope to relate to as many people as possible who have CMT and other similar disorders, providing hope, encouragement, and laughter. For more information on CMT, please visit www.cmtausa.org