Kenny Raymond | He/Him/His

Kenny was diagnosed with CMT1A in 2002 at the age of 29, after many years of searching for answers. Since then, he has dedicated his life to studying CMT and developing a clear, accessible way of communicating about the disease across the patient, healthcare, research, and biotech communities.

He is an author, advocate, and trusted member of the CMT community who brings deep expertise and lived experience to his role. Kenny’s passion for understanding this disease and his commitment to improving the lives of people living with CMT remain as strong as ever. He is currently pursuing a master’s degree in genetics from Arizona State University to further his work in CMT.

Kenny collects rare disease metaphors, survives on black coffee, and believes that a strong visual layout can, in fact, solve most problems.