Our Trustees
Paul Kontoyannis, President
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Paul established The Histiocytosis Research Trust with Dr Jon Pritchard in 1991. The two men met in 1982 when Paul took his 40-day old son, Nikolas, to Great Ormond Street Hospital. Nikolas was diagnosed with multi-system LCH and given only a 30% chance of survival.
After embarking on a number of treatments, Nikolas survived against the odds and despite having some 'late effects' of the disease, remains, together with his family, determined to raise awareness of histiocytosis and encourage scientists and clinicians to keep researching the disease. The family hope there will one day be a cure.
Professor Peter Beverley, Vice-President
Professor Beverley is an immunologist currently based in Oxford and heads a research group working on immunity to tuberculosis. He trained as a doctor at University College London and studied at the National Institute for Medical Research in London and Sloan Kettering Institute in New York. He then joined the Imperial Cancer Research Fund in London to work on immunity to tumours. In 1995, he became the founding director of the Edward Jenner Institute for Vaccine Research and began to study immune responses to infectious diseases.
Peter carried out studies with Dr John Pritchard and Professor Tony Chu on the use of CD1 monoclonal antibody for localisation and treatment of LCH disease in patients. In addition to being a Trustee of the H R Trust, Peter has been involved with the Nikolas Symposia for 20 years. He also chairs the Trust's Scientific Review Board.
Peter Bienenstock, Vice-President
As a baby, Peter's daughter, Lea was diagnosed with multi-system LCH and also developed haemophagocytic syndrome. After a year of chemotherapy, there was little hope but doctors at the Nikolas Symposium in Greece developed a salvage therapy which was successful. Within weeks, Lea had left hospital. Now a healthy 13-year-old, Peter believes Lea's story shows the value of working together to find treatments and ultimately a cure for all histiocytosis patients.
Howard Ingleby, Treasurer and Secretary
Accountant and IT expert, Howard, was appointed Treasurer in October 2009. His son Joel was diagnosed with LCH as a baby. Howard has raised thousands of pounds for the Trust through a variety of activities.
Richard Price, Trustee
Richard became involved with The H R Trust after his daughter was diagnosed with LCH. He was Secretary of the Trust for a number of years and is a member of Euro-Histio-net. His wife Sofia has also been actively involved.
Dr Vasanta Nanduri
Consultant Paediatrician Dr Nanduri is an expert in both paediatric LCH and HLH as well as other histiocytic disorders. She is based at Watford General Hospital and can be contacted on 01923 217391.
Dr Johann Visser
Dr Visser is a Consultant Paediatric Oncologist in the East Midlands Children’s and Young Person’s Integrated Cancer Service. He is based at Leicester Children’s Hospital and has a special interest in histiocytosis, sarcoma and clinical trials. He is an active member of the Histiocyte Society and the Children’s Cancer and Leukaemia Group.
Our Medical Advisors
Professor Anthony Chu
Consultant Dermatologist Professor Chu is the UK's leading expert on adult LCH and is based at Hammersmith Hospital, London. He holds a fortnightly LCH clinic where he sees between 14 and 16 patients.
Volunteers
Facebook
Joanna Savva
josavva@hotmail.co.uk
H R Trust Forum and HLH Befriender
Anne Devenney
annedevenney37@hotmail.co.uk
LCH Adult Befriender
Gemma Kelly
gemmmarie@hotmail.com
Histiobands
Joanna Savva
Histiofund@hotmail.co.uk
Christmas Cards
Hilary Bickler
Fundraising
Samathana Terry
Stephen Masser
smasser@hotmail.co.uk
Sherrie and Paul Bennett
sherrie150@btinternet.com
Adrian Oldfield
Lynn Oldfield