On April 17, 2023, the Charcot-Marie-Tooth Association welcomed Kenneth Raymond as a consulting contractor who will lend his CMT science writing expertise to develop content for a variety of CMTA digital and print communications. In this role, Kenny will generate content within his genetics, respiratory, and research translation skills.
Since his Type 1 diagnosis was confirmed in 2002, Kenneth has devoted his life to studying, researching and learning all things CMT, with an emphasis on genetics and CMT-related respiratory impairment.
The self-taught genetics expert is also a CMT blogger, an author and a CMT advocate committed to raising CMT awareness through fact-based information rooted in the latest understanding of CMT.
CMT is a progressive disease of the peripheral nerves that causes people to lose the normal use of their feet, legs, arms and hands. As the nerves die, the muscles around them follow suit. Symptoms include foot deformity (very high arched feet) and foot drop (inability to hold foot horizontal); a slapping gait (feet slap on the floor when walking); loss of muscle in the lower legs, leading to skinny calves; numbness in the feet; and difficulty with balance. In rare cases, hearing, vision and breathing may also be affected.
Kenneth is passionate about engaging CMT patients so that each member of the community gains a deeper understanding of this complex disease. He specializes in translating complex subjects into relatable narratives and on his website, Experts in CMT, he regularly writes articles on topics relevant to the CMT community.
Kenneth’s book, CMT-Associated Genes and Their Related Subtypes: The Definitive Guide, is available as a free eBook download on the CMTA website. This guide is a comprehensive accounting of the identified subtypes and an inclusive listing of all discovered CMT-associated genes as of its August 2021 publication. It clarifies the many non-CMT acronym types and subtypes both for people who have CMT and for practicing clinicians and discusses the limitations of CMT genetic testing.
The CMTA is the leading patient advocacy organization driving CMT research. Its mission is to develop treatments and a cure for the 3 million people worldwide who live with the disease, while improving the quality of life for patients and their families. The CMTA has invested $23.5 million in the search for a cure and its Strategy to Accelerate Research (STAR) brings world-renowned CMT researchers together with pharmaceutical and biotechnology partners and patients to accelerate scientific breakthroughs. The CMTA also offers community services, including 70 local branches, educational materials and patient conferences.