CMT was first described in 1886 by three physicians, Jean-Martin Charcot, Pierre Marie, and Howard Henry Tooth, who identified the condition as a nerve disorder. 

Our founder, Ivor Dartnall-Smith, was a devoted family man, Salvation Army Captain, and Master Builder. In 1969, he discovered that several members of his family, including himself, had Charcot-Marie-Tooth disease. Rather than let this hold him back, Ivor continued his work with the Salvation Army, even serving as Superintendent of a leprosy hospital in South India. Despite needing arm crutches to walk, he found creative ways to get around, taught patients building skills so they could earn a living, and even led relief work during a devastating cyclone. 

On returning to England, Ivor was inspired by Canadian advocate Linda Crabtree to start the first UK support group for people with CMT. What began as a few members and simple newsletters grew into a thriving community. Ivor tirelessly raised awareness, spoke on the radio, organised fundraising events, and even used his talent as an artist to raise money for the group. 

He remained passionate about helping people with CMT throughout his life, encouraging research, supporting families, and always bringing kindness and humour to those he met. Ivor passed away in 2012, followed by his beloved wife, Mavis, in 2013 – but the charity he founded continues to honour his vision of connection, support, and hope for everyone affected by CMT.