The Histiocytosis Research Trust was set up by Dr Jon Pritchard and parent Paul Kontoyannis after his son Nikolas was diagnosed with Langerhans' Cell Histiocytosis.
A world-renowned paediatric oncologist, Dr Pritchard is hailed as being one of few doctors to have contributed to improving survival rates for children with cancer. Although his speciality was liver and kidney tumours, he was a leading expert on paediatric LCH.
Dr Pritchard was born in Manchester in 1942 and trained at St John's College, Cambridge and St Thomas's Hospital. After graduating in 1966, he worked in what was then Rhodesia, spent four years in Liverpool and was a Medical Research Council travelling Fellow at Harvard. On his return to London, he worked at Great Ormond Street and Bart's. He also worked at Edinburgh's Royal Hospital for Sick Children.
In 1982, he set up The Sick Children's Trust which helps parents with accommodation at seven children's centres in Britain. In the same year, he helped a group of parents set up the Neuroblastoma Society, to support the families of sufferers and to fund research into cancer. He also helped start the international Histiocyte Society.
In 1981, Dr Pritchard met the Kontoyannis family after their son Nikolas was diagnosed with multi-system LCH. He suggested to Nikolas's father Paul that the best way to seek a cure for LCH would be to organise a meeting where scientists and clinicians could get together to discuss the disease. The first Nikolas Symposium was held in 1989 in Cambridge and has been organised annually ever since.
Following on from this first meeting, Dr Pritchard suggested that a charity should be set up to raise money to fund research into the disease - The Histiocytosis Research Trust was born in 1991.
Initially, the main aim of The H R Trust was to fund research projects and Dr Pritchard was instrumental in not only setting up the Trust, but also ensuring that the charity's Scientific Review Board was made up of first class medical professionals. To date, the Trust has funded two research projects.
In 2000, Dr Pritchard together with Richard Price, who became the Trust's Secretary and Treasurer, began hosting road shows around the UK in a bid to reach out to parents and patients seeking support and advice.
During the next few years, the Trust's parent and patient network grew and the Circle of Friends was established. There are now nearly 300 people registered with the Trust, with a strong nucleus raising money.
Dr Pritchard is remembered as being an outstanding individual who contributed and worked tirelessly for the causes he strongly believed in. He was very energetic, endearing, intelligent, cheerful and reassuring.
He led the way and supported both The Trust and The Nikolas Symposium in their efforts to search for a cure for LCH. He provided unrelenting support to all his patients and their families and will never be forgotten by the many he helped. He is remembered for bringing a smile to every ill child as well providing strength and hope.