CHILDREN with LEUKAEMIA, 51 Great Ormond Street, London WC1N 3JQ Registered Charity No. 298405 Tel: 020 7404 0808 Fax: 020 7404 3666 email: [email protected] websites: www.leukaemia.org www.runleukaemia.org www.challengeleukaemia.org Paul’s and Jean’s first school photographs Annual Report & Accounts 2005 Fighting Britain’s biggest child killer disease Fighting Britain’s biggest child killer disease CHILDREN with LEUKAEMIA CHILDREN with LEUKAEMIA Registered Charity No. 298405. Inaugurated in 1988 by Diana, Princess of Wales in memory of Jean and Paul O’Gorman Registered Charity No. 298405. Inaugurated in 1988 by Diana, Princess of Wales in memory of Jean and Paul O’Gorman About CHILDREN with LEUKAEMIA Foreword by the Chairman I am pleased to record that, electric and magnetic fields, a well-established risk despite our 2005 fundraising being factor for childhood leukaemia. As well as severely affected by the Tsunami participating in SAGE, the stakeholder advisory appeal, we sustained our annual group established by the Department of Health, we income at over £10 million. have been carrying out a range of other activities designed to draw attention to the issue and The continued increase in the encourage the implementation of protective number of children surviving leukaemia is a great measures against this very real risk to health. testament to the skill and dedication of the scientists and doctors who continually strive to We continue to develop and improve the improve treatments and care - and to years of governance of the charity. The death of Lord Mark investment in leukaemia research. The minimal Carlisle in 2005 was an enormous blow to us all. residual disease project - funded in partnership Mark became a trustee in 1991 and made a between CHILDREN with LEUKAEMIA and the tremendous contribution during his 14 years in Leukaemia Research Fund - is the single most office. We have strengthened the trustee board with important development in leukaemia treatment the recruitment of four new trustees - Professor since the development of combination therapies in Denis Henshaw, Sandra Mileham, Baroness the 1960s. I am delighted that we will now be Morgan of Drefelin and Linda Robson - each of funding this work through to its completion in 2009. whom brings new and important skills and talents to the Board. Despite these encouraging developments in treatment, the growth in the number of children We have also strengthened the staff team, with the developing the disease every year is of enormous introduction of two new posts. Dr Adrienne Morgan concern. We are determined to get to the bottom of joined us as Staff Scientist in February 2006 and this increasing incidence and have sustained our Peter Reynolds joined us as Deputy Chief focus on causes throughout 2005. In May we Executive in June 2006. Both of these posts will awarded 12 grants for new projects focused on substantially enhance our ability to meet our Leukaemia is cancer of the blood. It is the most on attending even though she herself was critically causes. These outstanding projects hold real charitable objectives and I am delighted to common childhood cancer and, despite enormous ill with cancer and was to die only two days later. promise of advancing our knowledge and may help welcome Adrienne and Peter to the team. advances in treatment, it remains a devastating us to reverse the increasing incidence. We have already started the application process for a further disease, killing one in every four children who are Shortly after Jean’s death, Eddie and Marion As ever, we are indebted to our friends, staff, round of grants for causes projects in 2006 and volunteers and supporters whose continuing diagnosed. The number of new cases is rising O’Gorman met Diana, Princess of Wales. Deeply expect to announce the awards towards the end of dedication has made possible the vital work every year and we don’t know why. moved by their double tragedy, she personally the year. described in this report. On behalf of the trustees I helped start this charity which she inaugurated in would like to record our gratitude for their hard Paul O’Gorman was 14 years old when he was January 1988. We continue to invest substantially in welfare work. I hope that we can continue to count on their diagnosed with leukaemia. He died only three projects - to ease the strain on family life. We have support in the years ahead. There is much still to do. months later – in February 1987. What began as a small memorial charity is now now completed our commitment to Great Ormond Britain’s leading charity dedicated to the conquest Street Hospital for the new patient hotel which is providing such wonderful facilities to families Paul had made his parents promise to help other of childhood leukaemia through pioneering travelling to London for treatment. And we have children with leukaemia and in November 1987 research, new treatment and support of leukaemic embarked on a new partnership with the team at they held their first fundraising ball. Their most children and their families. The indomitable spirit of GOSH to help fund the expansion of their inpatient dedicated fundraiser, Paul’s sister Jean, insisted Paul and Jean continues to inspire our work. cancer facilities. Eddie O’Gorman We are making progress in our campaign for better Chairman of Trustees protection against the dangers of exposure to 4th July 2006 2 CHILDREN with LEUKAEMIA Registered Charity No. 298405. Inaugurated in 1988 by Diana, Princess of Wales in memory of Jean and Paul O’Gorman Our aims and objectives CHILDREN with LEUKAEMIA around Britain KEY Research facilities Our aims Research projects Welfare projects 20 Professor Eric Wright, University of Dundee We aim to conquer childhood leukaemia. We want all children diagnosed with leukaemia to be cured and Medical School. Investigations of microenviron- for the cure to be effected with minimum disruption to their lives. Further we want to understand what mentally-mediated damage as a promotional causes children to develop leukaemia so that the rising incidence can be halted and reversed. factor in childhood leukaemia. 21 Northern Institute of Cancer Research, Paul 1 Paul O’Gorman Leukaemia O’Gorman Building, University of Newcastle. Research Centre, University of Our objectives Glasgow (due to open in 2007). 22 Dr Tevfik Dorak, University of Newcastle. Genes influencing body iron content and childhood leukaemia risk. 1. We will fund high quality research aimed at developing treatments 2 Minimal residual disease study, Royal Hospital for Sick Children, which are not only more effective but are also less debilitating and 20 23 Dr Richard Feltbower, University of Leeds. Glasgow. Does population mixing measure infectious disruptive to children’s lives. exposure at the community level? 3 Young Oncology Unit, Christie 24 Minimal residual disease study, Sheffield Hospital, Manchester. 1 2 Children’s Hospital. 4 Paul O’Gorman Blood 25 Paul O’Gorman Patient Hotel, Great Laboratory, Wolfson Molecular Ormond Street Hospital for Children, London. Imaging Centre, University of Manchester. 26 Paul O’Gorman Leukaemia Research 21 Centre, Institute of Child Health, London. 2. We will fund high quality research aimed at improving our 22 16 5 Paul O’Gorman Molecular Diagnostic knowledge about the causes of childhood leukaemia. Laboratory, The Paterson Institute, Christie 27 Institute of Cancer Sciences, Paul O’Gorman Hospital, Manchester (due to open in 2006). Building, University College London (due to open in 2006). 6 DNA sequencer, Cancer Immunogenetics 28 Expansion of Haematology and Oncology Laboratory, University of Manchester. Services, Great Ormond Street Hospital, London. 7 29 Dr Ketal Patel, MRC Laboratory of 23 Paul O’Gorman House. Parental Molecular Biology, Cambridge. Identification accommodation facility at the Royal Free Hospital, London. and characterisation of novel genes that 3 function in the Fanconi anaemia tumour 4 6 24 3. We will provide capital funding to encourage the development of 5 30 Laboratory of Cellular Therapeutics, Paul centres of excellence in childhood leukaemia research. suppressor pathway. O’Gorman Childhood Leukaemia Centre, Royal Free 8 Alasdair Philips, Cambridge. An exploration Hospital, London. of the possible causes of childhood leukaemia and other cancers. 31 Dr Hugh Brady. Paul O’Gorman Leukaemia 8 Research Centre, Institute of 9 Paul O’Gorman Laboratory, Coghill 7 Child Health, London. The role Research Laboratories, Gwent. of MLL in the molecular 4. We will take forward the results of relevant research so that the pathogenesis of infant and 10 Professor Nick Priest, University of childhood leukaemia. 9 36 25 knowledge gained can be used to best effect. Middlesex. Environmental radioactivity as a 28 26 12 34 31 32 cause of leukaemia in a high radiation area 11 10 27 15 Dr Paul Veys & Dr Persis 14 35 29 30 32 Amrolia. Great Ormond Street within central Asia: feasibility study. 13 33 15 17 Hospital, London. Anti CD34 immunotoxin study. 11 Paul O’Gorman Building, Bristol Royal 18 Hospital for Children. 19 33 Minimal residual disease study, 16 Hammersmith Hospital, London. 12 Professor Denis Henshaw, Human 5. We will raise public awareness about issues of concern and seek Radiation Effects Group, University of 34 Home from Home, Middlesex Hospital, to influence the development of policy to promote the best interests Bristol. Programme funding – London (due to open summer 2007). studies into environmental risk of children with leukaemia or at risk of leukaemia. factors for childhood leukaemia. 16 Community children’s nurses in Professor Mel Greaves, Institute of Cancer Cornwall and Tyne and Wear. 35 Research, London. Collateral DNA damage 13 Minimal residual disease study, University of as an indicator of prior aetiological exposures Bristol/ Bristol Royal Hospital for Children. 17 CHASE Hospice, Surrey. To support the in infant leukaemia. provision of services for children with 14 Dr Craig Donaldson, University of the West leukaemia.