Living with CMT

Welcome to the world of Charcot Marie Tooth (CMT) disease, a rare, progressive and hereditary neurological condition. Author Dawn Johnson takes readers through the physical challenges—the toll on the body, passing the disease on to her son, numerous surgeries, and ongoing treatments. She addresses the emotional toll as well, weighing in on the societal issues of bullying, lack of CMT awareness, giving back and paying it forward.

Dawn Johnson is an author and advocate for CMT awareness. She was born in Maryland and grew up in New Jersey, and navigates the world through the lens of the disease after being diagnosed at age twelve. She passed this hereditary condition to her son and only child, Ryan. Today she is the mother of an angel, for Ryan died on Christmas 2018 at the age of twenty due to complications of lymphocytic myocarditis.

Dawn earned a Bachelor of Science with a concentration in business administration and marketing from Rider University and graduated in three and a half years. She is a successful and experienced horseback riding instructor who is certified to teach therapeutic lessons. She owned Rockin D’s Riding Center from 1992 to 2015 and taught Western, English and therapeutic riding lessons to people of all ages while living with CMT. She also boarded horses and kept abreast of the latest in animal nutrition.

Due to the complications of her disease, Dawn isn’t in the saddle these days (something she misses) and works as an administrative assistant at WFI, a business owned and operated by her family. Her goal in publishing this book is to encourage others who live with CMT, and also speak up for the rights and dignity of those with disabilities. She wants to help people who live with this and other rare diseases and their caregivers in an entertaining as well as informative manner.

Please visit the “Dawn Johnson, Author” Facebook page to keep up with the book, written in tribute to her son Ryan, who was involved in the writing of the memoir until his sudden passing. It offers a very personal glimpse into a courageous mother-child journey.