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 This Annual Report has been printed and kindly donated by TOPS Design & Print (01708) 522117

Paul’s and Jean’s first school photographs Annual Report & Accounts 2004

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 Index Foreword by the Chairman

PAGE Foreword by the Chairman 3 Charitable expenditure exceeded £10 million for the Information about the Charity 4 first time in 2004 How we began 5 What is leukaemia? 6 £6.5m Grants to third parties First international conference on the causes and prevention of childhood leukaemia 8 £3.8m Developing young talent in leukaemia research 10 £3.1m Campaigns, projects and Focus on research: 12 programmes Radiation and childhood leukaemia 12 £2.0m

Stratification of chemotherapy based on levels of minimal residual disease 14 £4.1m £4.4m £4.4m Understanding infant leukaemia 15 £2.6m Paul O’Gorman centres of excellence in childhood leukaemia research 16 2001 (£4.6m) 2002 (£7.2m) 2003 (£8.2m) 2004 (£10.9m) Institute of Child Health, Great Ormond Street Hospital, London 16 2004 has been a year of growth extent of the problem of The continued growth in our Northern Institute for Cancer Research, University of Newcastle upon Tyne 16 and modernisation for childhood leukaemia. income and expenditure has Paul O’Gorman Leukaemia Research Centre, University of Glasgow 16 CHILDREN with LEUKAEMIA. demanded a strengthening of What began as a small memorial Our commitment to causation our financial management and Institute of Cancer Sciences, University College London 17 charity back in 1988 is now and prevention was reinforced this has been achieved with the Relief of suffering: 18 handling more than 1,000 by our successful conference on appointment of Ros Lewis as our donations on an average day. the causes and prevention of first Head of Finance, the Paul O’Gorman Patient Hotel, Great Ormond Street Hospital 18 This enabled our annual childhood leukaemia – the first engagement of Sayer Vincent as Paul O’Gorman House, Royal Free Hospital 19 charitable expenditure to pass ever international conference on internal auditors and the the £10 million mark for the very this theme. During the selection of Deloitte to take on Lifeline 19 first time in 2004. The following conference we launched a new the increasingly specialist role of Paul O’Gorman Respite Centre, Green Hedges 19 pages describe how these funds £1 million fund for research into external auditor with effect from were raised and spent. the causes of childhood 2005. The Charity has also been CHASE Hospice Care 19 leukaemia. The first tranche of incorporated to Limited The 17th Amazing Great Children’s Party 20 As trustees, we face the money was awarded as Paul Company status to achieve perennial difficulty of balancing O’Gorman Prizes to promising modernisation of our charitable Raising awareness 21 the needs of children who need young researchers presenting objectives and governance The Third Children’s Marathon Challenge 22 our help now, in the form of their work at the conference. The structure and opening the way to better treatment and support, remainder is to be distributed as widening the trustee base in Where does the money come from? 23 with the need to unravel the project grants to researchers 2005. causes of childhood leukaemia who successfully apply for Running events 23 and so protect future funding. As ever, we are indebted to our Special events 24 generations of children. As you friends, staff, volunteers and read this report I hope that you On the welfare front, 2004 saw supporters whose continuing Appeals 26 will feel that we have got the the opening of the Paul dedication has made possible Trustees’ policies and responsibilities 27 balance right. O’Gorman Patient Hotel at Great the vital work described over the Ormond Street Hospital, taking coming pages. On behalf of the Independent auditor’s report 28 The year saw a major switch in the number of Paul O’Gorman trustees I would like to record Statement of Financial Activities 29 our research funding portfolio – welfare facilities to four. The our gratitude for their help in funding more research and fewer grant of Green Hedges and the honouring the memory of Jean Balance sheet 30 buildings. We continued to completion of transfer of Paul and Paul through the life-saving Financial activities 2004 31 invest in the provision of welfare O’Gorman House to the Royal work of CHILDREN with services and also to carry on our Free Hospital close a chapter on LEUKAEMIA. Cash flow statement 32 work to increase public us operating this kind of facility Notes to the accounts 32-35 understanding of the nature and ourselves.

2 3 Information about the Charity How we began

CHILDREN with LEUKAEMIA is the Registered Charity Number: CHIEF EXECUTIVE Edward Copisarow registered working name of the 298405 Foundation for Children with SCIENTIFIC ADVISERS Prof. A. V. Hoffbrand, DM, FRCP, Leukaemia (formerly The Paul Solicitors: FRCPath, DSc (Chairman) O'Gorman Foundation for Children Nabarro Nathanson Prof. J. M. Chessells, MD, FRCP, FRCPath Prof. M. Coleman, BM, BCh, MSc, MFPhm with Leukaemia) which was Lacon House, Theobald’s Road Prof. N. E. Day, MA, PhD, MRCPath constituted as a charity under a Trust London WC1X 8RW Prof. J. Golding, MA, PhD, FSS, DSc Prof. J. M. Goldman, DM, FRCP, FRCPath Deed dated 4 January 1988, in Prof. D. L. Henshaw, BSc, PhD memory of Paul O’Gorman who died Auditors: Prof. H. G. Prentice, MB, FRCP, FRCPath on 6 February 1987 and his sister UHY Hacker Young AMAZING GREAT CHILDREN’S PARTY Jean, who died on 3 November St Alphage House, 2 Fore Street Hugo Amaya-Torres (Chairman) 1987. The Charity was inaugurated London EC2Y 5DH CELEBRITY FRIENDS Jeremy Beadle (Chairman) by Diana, Princess of Wales on 12 Russ Abbot • Debbie Arnold January 1988 at Mill Hill County High Bankers: Jane Asher • Colin Baker Floella Benjamin • David Berglas School where Paul had been a pupil. National Westminster Bank Plc Rodney Bewes • Christopher Biggins 30 North Audley Street Cilla Black • Brenda Blethyn Patricia Brake • Sir Richard Branson The objects of CHILDREN with London W1A 4UQ Johnny Briggs • Tim Brooke-Taylor LEUKAEMIA during the year of Faith Brown • June Brown Frank Bruno • Max Bygraves 2004 were: Developments since year Sir Michael Caine • Brian Cant end Jasper Carrott • Frank Carson Christopher Cazenove • George Cole • The relief of children On 1 January 2005, the Graham Cole • Joan Collins suffering from leukaemia. Foundation for Children with Phil Collins • Jess Conrad John Conteh • Bernard Cribbins • The promotion of research Leukaemia transferred its assets Roger Daltrey • Paul Daniels into the causes of and operations to Children with Jim Davidson • Dickie Davies Sharron Davies • Roger de Courcey childhood leukaemia. Leukaemia, a company limited Declan Donnelly • Jason Donovan • The promotion of research by guarantee with Company Glynn Edwards • Bruce Forsyth Peter Gilmore • Reg Gutteridge into the treatment and cure number 4960054. The registered Haruhisa Handa • Ainsley Harriott of childhood leukaemia. charity number for this new Barry Hearn • Bob Holness Bob Hoskins • Jane How company remains the same as Michael Howe • Nerys Hughes Gareth Hunt • David Janson Details of the Charity's activities for the Foundation. David Jason • Gorden Kaye In February 1987 leukaemia killed charity which she inaugurated in are available from the principal Kevin Keegan • Diane Keen Paul O’Gorman. He was fourteen January 1988. Henry Kelly • Felicity Kendal office of the Charity: The objects of the new company Sarah Kennedy • Eddie Kidd years old. The O’Gormans’ agony 51 Great Ormond Street are: Burt Kwouk • Bonnie Langford Eddie Large • George Layton did not stop there. Just nine The Paul O'Gorman Foundation London WC1N 3JQ Rosemary Leach • Rula Lenska months later cancer also killed for Children with Leukaemia is • The relief of children Lennox Lewis • Gary Lineker • Linda Lusardi Paul’s sister, Jean. today simply called CHILDREN Tel: 020 7404 0808 suffering with leukaemia. Sandy Lyle • Sir Paul McCartney Fax: 020 7404 3666 • To raise public awareness Debbie McGee • Anthony McPartlin with LEUKAEMIA but Paul's spirit Philip Madoc • Ruth Madoc Always a caring boy, Paul had email: [email protected] and knowledge in matters Ron Moody • Garfield Morgan continues to inspire our work. www.leukaemia.org relating to childhood Patrick Mower • Tom O’Connor made his parents promise to help Bill Oddie • Richard O’Sullivan other children with leukaemia leukaemia. Nick Owen • Nicholas Parsons What began as a small memorial The current serving Trustees • The promotion of Su Pollard • Robert Powell and within weeks of his death Pauline Quirke • Claire Rayner charity is now Britain’s leading who all served for the whole of research into the causes, Angharad Rees • Anneka Rice they started fundraising. charity dedicated exclusively to the year are: alleviation, prevention, Linda Robson • Tessa Sanderson Gerald Scarfe • Phillip Schofield the conquest of childhood treatment and cure of Lloyd Scott • Pat Sharp In November 1987, just days Eddie O'Gorman (Chairman) childhood leukaemia and Ivor Spencer • Michaela Strachan leukaemia through pioneering • Chris Tarrant after Jean’s death, they met The Earl Cadogan DL to publish the results of Angela Thorne • David Vine Diana, Princess of Wales. Deeply research, new treatment and Dennis Waterman • Kevin Whately The Lord Carlisle of Bucklow PC, QC, DL such research. June Whitfield • Simon Williams moved by the double tragedy, support of leukaemic children Marion O'Gorman Gary Wilmot • Frank Windsor she personally helped start this and their families. Terry Wogan • Susannah York Paul Young 4 5 What is leukaemia?

Leukaemia is a cancer affecting However over the same period in The reasons for the increasing “...only 40 years ago the the blood-forming cells in bone which the number of deaths from incidence remain unclear. survival rate was less marrow. It is the most common childhood leukaemia has been Despite the breakthroughs that than five per cent. childhood cancer and it kills more falling, the number of new cases have been achieved in the Thankfully, today’s children than any other disease in diagnosed each year has been treatment of the disease, we still children have a much the UK. rising. Children under the age know very little about what brighter outlook since of five years are worst causes childhood leukaemia. remarkable In leukaemia, normal control affected - over half of all This is now one of the main mechanisms in the blood break breakthroughs in childhood leukaemias priorities of our research down and the bone marrow starts treatment mean that occurred in this programme. to produce large numbers of three in four children age group in abnormal white blood cells, now survive.” the period disrupting normal production of 1996 - blood cells. Leukaemia incidence, mortality and survival trends, 2000. and Wales, 1911 to 2000. There are two main types of 80 100 leukaemia in children - acute 90 lymphoblastic leukaemia (ALL) 70 and acute myeloid leukaemia 80 60 (AML). These acute forms of 70 leukaemia come on quickly and 50 60 progress rapidly if left untreated. ALL accounts for 85 per cent of all 40 50 cases of childhood leukaemia. It is Incidence 30 40 the only form of leukaemia – and 30 one of the few forms of cancer – 20 Survival at five years (%) that is more common in children 20 than in adults, occurring most 10 Mortality Survival 10 commonly in children between the 0 0 ages of two and four years.

Annual incidence or mortality rate per 1,000,000 1911- 1916- 1921- 1926- 1931- 1936-1941-1946-1951-1956-1961-1966- 1971- 1976- 1981- 1986-1991-1996- Without effective treatment, both 15 20 25 30 35 40 45 50 55 60 65 70 75 80 85 90 95 00 ALL and AML are rapidly fatal – Calendar period of diagnosis (incidence, survival) or of death only 40 years ago the survival rate From presentation by Professor Michel Coleman and Anjali Shah, was less than five per cent. CHILDREN with LEUKAEMIA Thankfully, today’s children have a International Scientific much brighter outlook since Conference, September 2004. remarkable breakthroughs in treatment mean that three in four children now survive.

6 CHILDREN with LEUKAEMIA Registered Charity No. 298405. Inaugurated in 1988 by Diana, Princess of Wales in memory of Jean and Paul O’Gorman First international conference on the causes and prevention of childhood leukaemia

The increasing incidence of radio exposure, with diverse childhood leukaemia, combined stories covering the range of with emerging concerns about the topics presented during the long-term effects of leukaemia conference. This helped to raise treatments, made prevention a awareness of the need for top priority for us in 2004. further research into the causes of childhood leukaemia and In September we hosted the first boosted awareness of the ever international conference charity’s vital work to a new high focusing on the causes of where one in seven adults in childhood leukaemia. The Great Britain had heard of our conference attracted delegates work. and speakers from leading research centres around the To increase the pace of research, world. Over five days, these we announced new funding of scientists shared their findings £1 million for projects and exchanged their expert investigating the causes of views, all with one purpose in childhood leukaemia. We mind – the prevention of received applications totalling childhood leukaemia. almost £5 million and as we enter 2005 we face the difficult The presentations included some task of deciding which projects ground-breaking research, with are most worthy of support. We topics ranging from the role of must also raise the £1 million Conference Scientific viruses and infections in needed to pay for the selected Committee: childhood leukaemia to the projects. effects of ionising and non- Professor Denis Henshaw, ionising radiation, ‘light at night’ We are indebted to Professor University of Bristol and melatonin suppression, air Denis Henshaw, who chaired the (Conference Chairman) pollution and diet. By bringing Conference Scientific Professor Bryn Bridges, together scientists from a range Committee, and to all members University of Sussex of disciplines and from all over the of the Committee for their hard Professor Michel Coleman, world, the conference stimulated work and dedication in ensuring London School of Hygiene and a great deal of discussion and the success of our first ever Tropical Medicine debate, generating new ideas conference. Dr Thomas Erren, which we hope will flow through University of Cologne into the research setting. Professor Dudley Goodhead, MRC Harwell The conference generated Professor Roy Harrison, extensive broadsheet coverage University of Birmingham as well as national television and Alasdair Philips, Powerwatch

8 CHILDREN with LEUKAEMIA Registered Charity No. 298405. Inaugurated in 1988 by Diana, Princess of Wales in memory of Jean and Paul O’Gorman Developing young talent in leukaemia research

One of our aims has Poster prize winner always been to attract Dr Michelle Morrow outside the Paul O'Gorman Research young talent into Centre, Great Ormond leukaemia research, to Street, where she works with nurture in tomorrow’s top CHILDREN with LEUKAEMIA scientists an interest and grant-holder Dr Hugh Brady enthusiasm for solving some of the complexities of childhood leukaemia. The host institutions of Previously we have funded each of these six young researchers were awarded PhD students at both the a grant of £15,000, with the University of Bristol and stipulation that the funds the London School of be used to support any Hygiene and Tropical aspect of the researcher’s Medicine. work relevant to childhood leukaemia. Prize winners To encourage the have been asked to participation of young provide a report in one year’s time on how they scientists in our have spent the funds. conference we announced our intention to award The intention behind these prizes for the best ‘poster awards is to give these presentations’ presented promising young scientists by scientists under the age the opportunity to pursue of 30 years. Members of some innovative new the judging panel were research into childhood impressed with all 17 leukaemia, pump-priming new lines of enquiry. Who entries but the six Paul knows where this might O’Gorman Poster Prizes lead? were awarded to the following authors: • Donna Hammal, • Marilyn Kwan, • Michelle Morrow, • Stuart Peirson, • Kevin Urayama, • Elizabeth Ainsbury, 29 years old 28 years old 27 years old 28 years old 27 years old 23 years old University of Newcastle upon University of California, Paul O’Gorman Centre for Imperial College London University of California, Berkeley University of Bristol Tyne Berkeley Childhood Leukaemia, Institute "Experimental validation of novel "Influence of cytochrome P450 IAI genetic polymorphisms on the "An investigation into "Paternal occupation as a risk "Food consumption of children of Child Health, London and conventional approaches to association between residential polarisation as a possible metric factor for leukaemia and non- and risk of childhood leukaemia" "Functional analysis of TEL-AML1 quantitative real-time PCR data exposure to traffic and childhood with regard to human exposure Hodgkin’s lymphoma in children fusion protein in haemopoietic analysis" leukaemia" to ELF magnetic fields from and young adults. A study from progenitor cells in vivo and in vitro." appliances within the home" the north of England."

10 CHILDREN with LEUKAEMIA Registered Charity No. 298405. Inaugurated in 1988 by Diana, Princess of Wales in memory of Jean and Paul O’Gorman Focus on research

We continue to fund a wide However the mechanism by variety of research projects and which these fields act to cause in 2004 we were able to increase leukaemia remains unclear. our research grant expenditure Professor Henshaw’s team have by one third – to £3.7 million. demonstrated how high voltage Over the next few pages we power lines emit electrically describe some of the projects we charged ‘corona ions’ that can are funding. create tiny ‘nano-particles’ of air pollution, capable of penetrating Radiation and deeply into the lung and passing childhood leukaemia into the blood stream.

Professor Denis Henshaw and Professor Henshaw has also team in the Human Radiation worked with Professor Russel Effects Group at the University of Reiter of the University of Texas Bristol received funding of £1.3 to develop the ‘Melatonin million in 2004 – a five year grant hypothesis’ which has been to enable them to continue their proposed as a means by which ground-breaking work examining exposure to magnetic fields the effects of electromagnetic increases the risk of leukaemia. fields on human health. The theory is that magnetic fields suppress the body’s production We have been funding the team of melatonin, a hormone which at Bristol for nine years now, in has been proved to act as a which time the link between natural anti-cancer agent. Any electromagnetic fields (such as reduction in melatonin levels may those given off by high voltage therefore reduce the body’s power lines) and childhood ability to protect itself against leukaemia has become widely cancer. Exposure to light at night accepted. In response to the is thought to have a similar effect growing body of evidence, on melatonin production. agencies such as the UK National Radiological Protection Richard Box, artist in residence Board (NRPB), the International at the University of Bristol, Agency for Research on Cancer helped draw attention to the and the US National Institute of dangers of usually invisible Environmental Health Sciences electromagnetic fields, by have now agreed that electric ‘planting’ 1,301 fluorescent and magnetic fields are possible bulbs under a power line. The human carcinogens. NRPB tubes are powered only by the guidelines now caution against emissions from the overhead prolonged exposure at 0.4 cables. This striking image microTesla (the level at which attracted widespread media

studies have found a doubling of attention, including the front photo: Lewis Whyld/SWNS risk of childhood leukaemia). page of The Independent.

12 CHILDREN with LEUKAEMIA Registered Charity No. 298405. Inaugurated in 1988 by Diana, Princess of Wales in memory of Jean and Paul O’Gorman Focus on research

have their dose reduced at an genes in white blood Scientists at Great Ormond Street studying the genetic Clinical trial: Understanding infant changes which lead to infant leukaemia. This should Scientists in Bristol using the latest early stage, reducing the risk of cells in an inappropriate pave the way for new, more effective treatments. technique to measure Minimal Residual stratification of leukaemia Disease. This provides the information the chemotherapy based on long term side effects without way, causing them to child’s doctor needs to determine the right mutate into leukaemia treatment regime. levels of minimal residual compromising the chance of a We awarded a further grant of cells." disease cure. On the other hand, those £666,372 to Dr Hugh Brady at the Institute of Child Health, children who have high level The team are breaking topping up the funding that was In 2004 we made a further grant MRD are responding badly and down this complex awarded last year to fund Dr could benefit from early series of events to towards a study being led by Dr Brady’s full five-year programme intensification of therapy to understand precisely Nick Goulden of Bristol Royal of work. what happens at each Hospital for Children. Working reduce their risk of relapse and Paul Archer, Research Technician. stage. Having Cell fraction containing leukaemic cells being with colleagues from maximise their chance of The high overall cure rate for separated from bone marrow samples discovered which genes laboratories in Bristol, Glasgow, survival. childhood leukaemia masks an are switched on in the extremely poor outlook for Manipulation of leukaemic blood cells in culture to enable London and Sheffield, Dr white blood cells as a identification of the target gene sets. children with certain forms of the Goulden is co-ordinating a 420 children were registered on result of the disease. Children who are national clinical trial of a new the trial by the end of year one chromosome fusion, the diagnosed with leukaemia at team now have a two- molecular technique for and are now progressing less than one year of age have a pronged approach: measuring the precise number of through their treatment. These particularly poor prognosis. leukaemia cells in a child’s bone trials should result in increased Fewer than 20 per cent will reach • To determine the marrow – known as minimal survival rates and a reduction in their fifth birthday. effects of these genes residual disease or MRD. the serious long-lasting side on the development, effects which can be caused by Working in collaboration with proliferation and Extraction of the DNA from separated cells. the high doses of powerful drugs their colleagues at Great resilience of leukaemic Ormond Street Hospital, Dr cells by expressing the The level of MRD present in a used to treat leukaemia in Brady and his team at the genes in bone marrow children. child’s bone marrow when they Institute of Child Health are stem cells; and complete their first 28-days of making important discoveries • To define the role of Using the DNA sequencer enables scientists to This project has been acclaimed the same genes in the determine genetic changes within individual nucleotides chemotherapy has been shown about the genetic changes of DNA. to be a good indicator of relapse as the most promising way which lead to infant leukaemia. normal function of the bone marrow stem risk and use of the new forward in improving the Dr Nigel Wood: Real-time quantitative MRD assay cells, ie. what happens prognosis for children with Dr Brady, who is Head of the in preparation measurement technique has to cells if this gene is Molecular Haematology and been incorporated into the leukaemia. We have so far deleted? Cancer Biology Unit, explains: current national childhood contributed £1.44 million and will continue fundraising until we The ultimate aim of this leukaemia trial, ALL 2003. "The vast majority of infant programme of work is Doctors and scientists are reach the £2 million necessary to leukaemias are caused by a to improve the poor working together to establish complete this stage of the trials. genetic change involving a break outlook for infants with We are deeply grateful to Bunzl whether children’s treatment within the MLL gene on leukaemia by Dr Jeremy Hancock, Scientific Co-ordinator: regimes can be individually who have now contributed chromosome 11. The broken developing new Analysis of real-time quantitative MRD assay tailored according to their MRD £40,000 towards this project, to chromosome then fuses with treatments which can other broken chromosomes status. the Foyle Foundation who have effectively block the (usually chromosome 4), forming made a grant of £26,000 and to series of events which Examination of especially prepared leukaemic blood cells a new gene at the fusion point. are causing their white to find ways of blocking their development. The theory is that children with all the other trusts, companies This leads to the production of a blood cells to and individuals who have helped low level MRD are responding novel protein which switches on malfunction. well to chemotherapy and could fund this important work.

14 CHILDREN with LEUKAEMIA Registered Charity No. 298405. Inaugurated in 1988 by Diana, Princess of Wales in memory of Jean and Paul O’Gorman Paul O’Gorman centres of excellence in childhood leukaemia research

As a new charity back in 1988, our The Institute of Cancer first goal was to raise £2 million Sciences, Paul O’Gorman for a new leukaemia research Building, University College centre at London’s Great Ormond London Street Hospital for Children. It took seven years for us to achieve Work began in the summer of this goal, but the Paul O’Gorman The Paul O'Gorman Building, 2004 on the new Institute of Childhood Leukaemia Research housing the Northern Institute Cancer Sciences which will Centre there now houses one of for Cancer Research, opened coordinate all of UCL’s cancer the UK’s leading childhood in November 2004. research, providing a focus for leukaemia research teams. excellent basic science and Our commitment to the Paul translational studies across the O’Gorman Centre at Great College’s different sites. The Ormond Street continues and we Institute will ultimately house over have also established further Paul 200 scientists. O’Gorman Research Centres in Bristol, Manchester and The Department of Haematology Newcastle. Two new Paul will occupy a quarter of the space O’Gorman facilities will soon be of the new Institute, with half of opening – at the Institute of their resource being devoted to Cancer Sciences in London and research into the causes and at the University of Glasgow. treatment of leukaemia. It is intended to establish a new professorial unit there dedicated Paul O’Gorman Building, to the study of leukaemia in Northern Institute for Cancer Research, Newcastle upon adolescents. Tyne The relationship between The latest Paul O’Gorman Centre boost for our research. They will in 2004, helped by the centre which will bring together The new centre, due to open in CHILDREN with LEUKAEMIA and to open is at the University of help scientists to collaborate sponsorship success of Glasgow’s existing leukaemia autumn 2005, will provide a UCL is now 17 years old and we Newcastle where the new Paul more effectively and enable us to CHILDREN with LEUKAEMIA expertise. Haematology research much-needed translational are pleased to support the O’Gorman Building houses the fast track new treatments from runners in the 2004 BUPA Great is currently scattered around six research laboratory that will give development of this new centre of Northern Institute for Cancer the laboratory bench to the North Run. excellence. We have pledged to different sites in Glasgow, making both clinicians and researchers Research. The three-floor centre patient’s bedside. Our aim is to try to raise £2 million towards the collaboration much more difficult access to the most advanced has four laboratories and brings identify two new targets for anti- The Paul O’Gorman than it might otherwise be since it £30 million cost of the new together 120 scientists from four cancer drugs each year and to Leukaemia Research Centre, facilities and equipment. We have building, due to open in 2006, and different sites across the means that routine NHS work, take one treatment from University of Glasgow pledged to try to raise £500,000 have so far raised and given University. essential research and clinical development in the lab to clinical towards the £2.25 million cost of £500,000 towards this total. activity are separated, with staff trials." We are working with the the new centre and have so far Professor Herbie Newell, often working with outdated Leukaemia Research Fund and the raised and given £300,000 Newcastle University Head of equipment or inadequate facilities. We were able to complete University of Glasgow to provide a Cancer Therapeutics, said "The towards this pledge. payment of our £2 million pledge new facilities will provide a major major new leukaemia research

16 CHILDREN with LEUKAEMIA Registered Charity No. 298405. Inaugurated in 1988 by Diana, Princess of Wales in memory of Jean and Paul O’Gorman Relief of suffering

Paul O’Gorman House Lifeline Green Hedges

During its first year of operation, In 1996 we began our For eleven years we have been Paul O’Gorman House has association with what was then offering families going through provided 471 nights’ called ‘Russian Lifeline’, the trauma of leukaemia accommodation to the parents contributing to the cost of bone treatment the opportunity to of children being treated for marrow transplants at enjoy a free seaside holiday at leukaemia and cancer at the Hammersmith Hospital for two the Paul O’Gorman Respite Royal Free Hospital. teenage leukaemia sufferers Centre, Green Hedges in West from St Petersburg. Alexey and Sussex. As part of a review and Situated five minutes’ walk from Sasha are now healthy young consolidation of our activities in the hospital, Paul O’Gorman adults. 2004 Green Hedges was granted House gives parents somewhere to the trustees of the Venik Trust, to go once their child has settled Over the years Lifeline’s work along with one year’s running for the night. They can relax, has widened to include children costs. The Venik Trust will cook dinner and get a good from other countries where continue to use the facility for night’s sleep in comfortable, children do not have access to the benefit of children with spacious accommodation, safe life-saving leukaemia treatment, leukaemia but, with its in the knowledge that they are including Georgia, Krygyzstan considerable expertise in caring close by if their child needs and Ukraine. Lifeline’s long-term for patients and their families, them. aim is to support the Venik will be best placed to use development of local facilities this limited resource to optimal Eddie and Marion O'Gorman We granted the House to the and expertise so that children no effect. with HRH Princess Alexandra at Trustees of the Hospital at the longer have to travel overseas the opening of the CHASE Hospice Care Paul O'Gorman Patient Hotel. end of 2003, along with five for treatment. But this is a long years’ running costs, and we are job and in the meantime there delighted that it is being so well are seriously ill children who CHASE Children’s Hospice Paul O’Gorman Patient Hotel, The team at GOSH face an the road from the Hospital, this used. Putting the Hospital in cannot wait. Service provides help to children Great Ormond Street enormous demand on their free ‘Hotel’ provides somewhere control of the facility means that who are not expected to reach services and have developed a safe, comfortable and the staff on the ward can provide The number of children being their 19th birthday. They offer In 2004 we paid the first £1 new model of care to help keep convenient for parents and immediate access for families referred to Lifeline is increasing care and support in the family million of the £2 million we plan pace. Their aim is to keep non- children to stay before and after who need it. One family stayed rapidly and in 2004 they dealt home and at St Christopher’s, to raise towards a wonderful critical children out of the acute treatment. Children must usually for 47 consecutive nights, with referrals for 107 children, their hospice in Guildford, new facility for children being wards. Not only does this arrive at 8am to begin their showing just how important it is taking to 265 the total number of working with families through to treated at Great Ormond Street minimise the amount of time that outpatient treatment. Early guest for them to have a local base children helped. We responded bereavement and beyond. In Hospital (GOSH) – the Paul children spend in hospital and Maggie from Rochester, whose whilst their child is in hospital. by increasing our funding to 2004 we were able to provide a O’Gorman Patient Hotel. disruption to their lives, but it three year old child is being Paul O’Gorman underwent his £800,664, directly funding the grant of £100,000. This was used helps to ensure that beds are treated for leukaemia, told how leukaemia treatment at the Royal cost of medical treatment for to help meet the cost of the As one of the UK’s leading available for the most critical they previously had to leave Free and his parents know only these children. Our partnership services for the families of children’s hospitals, GOSH is a patients. home by 5.45am to be at the too well how hard it can be for with Lifeline enables them to children whose leukaemia national centre of excellence for Hospital by 8am. Now they can family members, often having to continue helping the children treatment had failed. many conditions and children The Paul O’Gorman Patient travel to London the day before steal what sleep they can in who need urgent treatment travel from all over the UK to be Hotel, which opened in October and have a restful night at the waiting room chairs or simply today whilst building the local treated there. The Hospital is the 2004, is part of this model, Hotel. Being able to stay the lying on the hospital floor. This resources to treat the children UK’s biggest referral centre for supporting the work of the night after treatment is also a was our motivation behind who will need help tomorrow. childhood leukaemia, with the hospital’s daycare wards, relief for children and parents establishing this new team there treating almost one including Elephant Daycare, the exhausted after a day’s gruelling accommodation facility. fifth of all cases. cancer day care unit. Just across therapy.

18 CHILDREN with LEUKAEMIA Registered Charity No. 298405. Inaugurated in 1988 by Diana, Princess of Wales in memory of Jean and Paul O’Gorman The 17th Amazing Great Children’s Party Raising awareness

Every year we organise the most enormous fairground rides, clowns and costume party for children suffering from leukaemia. characters, bouncy castles and many other Some bring brothers and sisters. And to make entertainments, all laid on free of charge. sure it really is an enormous party we invite thousands of other disadvantaged children as As always we relied on our huge team of well. volunteers to make the day run smoothly. Around 800 individuals donated their time and This year’s party was no exception. Held in talent to give the children a truly memorable London’s Park, we welcomed around day out. And many companies donated the 6,000 children. Chart-topping singer Jamelia products we need to throw such a grand party – entertained and enthralled the children – as did including food, drink, goodies and prizes. the many other stars and attractions including

over 2,600 miles Perth Sydney

On 13th October 2004 Lloyd including numerous close CHILDREN with LEUKAEMIA. He Scott, our best known fundraiser, encounters with thundering road also gained worldwide media set off across Australia on a trains and all manner of local coverage, drawing public penny farthing. His challenge wildlife. He pedalled his way attention to the problem of was to cycle across some of the through extreme weather childhood leukaemia. Tracking most inhospitable terrain on the conditions – ranging from showed that the serious planet - from Perth to Sydney. blistering heat to torrential rain messages behind Lloyd’s and gale force winds. headline-grabbing antics are After completing challenges on hitting home. People who six of the seven continents – Said Lloyd, who has himself recalled receiving information including walking the Flora suffered from leukaemia "At about Lloyd’s challenge were 75 London Marathon in a deep sea times it reminded me of my per cent more likely than the diving suit and finishing the first battle against leukaemia: a long, general population to name ever underwater marathon in slow, often painful struggle. leukaemia as the UK’s biggest Loch Ness, Lloyd made history Fortunately the outcome was child-killer disease. again, reaching his destination of once again successful." Bondi Beach, Sydney after 50 days and 2,642 miles. The By completing this remarkable journey was full of incidents, feat, Lloyd raised £322,262 for

20 CHILDREN with LEUKAEMIA Registered Charity No. 298405. Inaugurated in 1988 by Diana, Princess of Wales in memory of Jean and Paul O’Gorman The Third Children’s Marathon Challenge Where does the money come from?

Once again, more than 100,000 children took part in our annual Mr Men and Little Miss Children’s Marathon Challenge. Altogether they raised almost £2 million for their schools, guide units, scout sections, is for Time to make a difference. clubs, groups and CHILDREN with LEUKAEMIA. That’s is for Help to raise money for charity. around £20 per child – a is for Enthusiasm goes a long way. phenomenal achievement. is for Cherished memories. Each child took on a personal is for Happiness helps in the bad times. challenge relating to the is for Involve as many people as possible. number 26 – the number of says LEUKAEMIA MUST GO. miles in a marathon. There are is for Dreams of today, are realities of the future. over 100,000 tales of innovation, excellence and is for Research has made a big difference to survival rates. achievement to tell. We have Tim Rogers, running for is to Enjoy the time you have. picked just one to tell you here, CHILDREN with LEUKAEMIA is to Never stop hoping. from Sarah, a member of the dressed as Mr Bump, made the 1st Great Chart and Singleton front page of ! is to Stay focused. Guide Unit, who herself has We have had another successful and we are forever grateful to all LEUKAEMIA in the 2004 Flora survived leukaemia. Her is to Make every penny count. year in fundraising terms and the those who remembered London Marathon. Distinctive in challenge was to write a 26 line is to Accept any offers of help. work described over the CHILDREN with LEUKAEMIA in their Mr Men and Little Miss poem. previous pages was only made their will. running vests, the team attracted is to Raise as much money as possible. possible by the generosity and a great deal of media attention - is for All children are precious. hard work of the thousands of Running events Tim Rogers as “Mr Bump” made is to say THANK YOU GREAT ORMOND STREET, without you I would not be here today. people who contributed to this the front page of The Times. fundraising success. In 2004 more than 2,200 people Between them the team ran is to Highlight the successes. For many years we have been chose to support CHILDREN 28,820 miles on the day. To put is to Organise more fund raising. fortunate to benefit from the We are so fortunate to benefit with LEUKAEMIA by taking part this in perspective, if they had from the effort and imagination in runs and walks both at home started off in relay from is for No donation is ever too small. generous support of the Hargreaves family who have of these supporters who, as well and abroad. Many of our runners Greenwich, they could have run given us free use of the Mr Men as donating their own money, have personal reasons for taking to the finish line in The Mall via is for Chemotherapy worked for me. organise all manner of weird and part in these events. Many tell us Sydney, Australia! and Little Miss Characters. We is for Helping others, helps you feel good too. wonderful fundraising events, how they have lost loved ones to are enormously grateful to sell our raffle tickets and take leukaemia. Others have fought The outcome of this incredible Chorion plc who have now made part in sponsored events such leukaemia themselves. This goes feat was a staggering £1.6 is for Acute Lymphoblastic Leukaemia. CHILDREN with LEUKAEMIA the as the Flora London Marathon. a long way towards explaining million to support our research ] Official Charity of the Mr Men Our supporters never fail to the remarkable dedication into childhood leukaemia. This and Little Miss Characters, amaze us with the lengths to shown by runners, not only in is equivalent to almost £1 per is to Enjoy being alive. enabling us to continue to use which they will go to raise funds. reaching the finish line but in inch of the 26.2 mile route! We are profoundly grateful to raising astonishing sums of is to Never give in to any illness. these wonderful images free of charge. each and every one of them. money in the process. is for Great things lay ahead in life. is to Experience everything you can. Our legacy income grew six-fold A team of 1,100 runners this year – to almost £600,000 – represented CHILDREN with

22 CHILDREN with LEUKAEMIA Registered Charity No. 298405. Inaugurated in 1988 by Diana, Princess of Wales in memory of Jean and Paul O’Gorman Where does the money come from?

Special events Over two nights in June, Diva Elizabeth, Duchess of Our annual Captains’ Cup in The 18th Ball, hosted at top class entertainment and Opera performed Donizetti’s Northumberland kindly September was another London’s Grosvenor House in plenty of fun and games. And Over the 17 years since we Lucia de Lammermoor and continues as Patron of this successful event, with Golf Club November, featured Abba tribute most importantly, the evening began, a well-established social Mozart’s Die Entführung aus successful event. Captains, who have been raising band, Björn Again, as the star raised over £250,000 towards calendar has evolved. The key dem Serail in the Great funds for CHILDREN with attraction. More than 1,000 our work. events making up this calendar Conservatory at Syon. Guests all LEUKAEMIA during their year in guests enjoyed excellent food, have achieved success thanks enjoyed a fabulous evening in office, joining Sandy Lyle and a to the imagination and hard work grand surroundings, raising host of celebrities to play the of a number of dedicated nearly £90,000 in the process. prestigious West Course at individuals and committees. Wentworth. Each team comprised three Captains and one celebrity and despite a short, In February, our great friend and sharp downpour of rain, a supporter Caroline Randerson magnificent day’s golf raised kicked off the fundraising year almost £60,000 towards our work. with her annual Spring into Summer Ball. Sandown Park Racecourse was the venue for The Paul O’Gorman Banquet and what was Caroline’s most Ball is our longest running, successful Ball yet, raising more annual event. First held in 1987, than £50,000 towards our work. only months after Paul died, Paul’s sister Jean insisted on attending even though she was Jeremy Beadle’s Quiz Party in critically ill and was to die only March proved yet again to be a two days later. Today the Ball huge success, also enjoying a holds a special place not only in record-breaking year in the hearts of the O’Gorman fundraising terms. Celebrity family but the hundreds of teams pitted their wits against people who return every year. teams of supporters in a crazy night of cerebral nonsense, raising close to £150,000 to help children with leukaemia.

24 CHILDREN with LEUKAEMIA Registered Charity No. 298405. Inaugurated in 1988 by Diana, Princess of Wales in memory of Jean and Paul O’Gorman Where does the money come from? Trustees’ policies and responsibilities

Appeals combined total of £1.4 million, a Organisational structure and Vincent to focus on risk areas to • select suitable accounting tremendous contribution approach review the internal controls in policies and then apply them Our appeals have a dual aim. towards our work. place and recommend any consistently; During 2004, under the terms of improvements to controls and Not only are they intended to the Trust Deed (dated 4 January methods to mitigate exposure to • make judgements and raise vital funds to support our Our autumn appeal was penned 1988) and Variation of Trust Deed the risks. estimates that are reasonable by fundraiser extraordinaire, programme of work, they also (dated 10 December 2003), the and prudent; Lloyd Scott, seeking help us get across key trustees retained all powers to Reserves and investment messages about childhood sponsorship for his penny determine how the charity policies • state whether applicable leukaemia. We are fortunate to farthing challenge described on operated except the power to accounting standards and benefit from a great deal of page 21. His record-breaking change the Charity’s objects The charity has very low fixed statements of recommended celebrity support in getting these achievement captured the which required Charity costs, with payroll costs for practice have been followed, messages out. imagination of people from all Commission agreement. example less than 4% of the subject to any material over the world who sponsored Trustees were responsible for all total expenditure, and therefore departures disclosed and Hollywood actress Brenda Lloyd to the tune of £322,262. strategic decisions which were there is little need of large explained in the financial implemented by the Chief reserves. Furthermore, the fixed statements; and Blethyn, a long-time supporter of And our annual Christmas Grand Executive. asset base is now at zero after our work, led our spring appeal the grant of the Green Hedges • prepare the financial Draw was headed by TV to raise funds for the MRD trials Following the transfer of the property in the year. The statements on the going coordinated from the Paul personalities Ant and Dec assets and undertakings of the trustees feel it is sufficient to concern basis unless it is O’Gorman Building at Bristol (Anthony McPartlin and Declan charity on 1 January 2005 to a maintain an unrestricted reserve inappropriate to presume that Royal Hospital for Children (see Donnelly), taking our Christmas company limited by guarantee, of no more than three months of the charity will continue in p14). Her appeal raised a appeal income for 2004 to more the new company is governed the annual expenditure and have operation. fantastic £456,185 towards this than £2 million. by its Memorandum and Articles adopted this as their policy. vital project. Brenda also joined dated 11 November 2003 as Free reserves at 31 December The trustees are responsible for the Mr Men and Little Miss team We continue to track the impact amended by special resolution 2004 amounted to £2.0m (2003: keeping proper records which to run the Flora London of these mailings and analysis dated 30 November 2004. Under £1.7m), which represents eight disclose with reasonable these Articles, trustees are weeks of the annual expenditure accuracy the financial position of Marathon on our behalf for the showed that people who appointed by a majority vote of in 2004 and therefore meets the the charity and enable them to recalled receiving information third year running. the members (who are all the policy requirement. In order to ensure that the financial from Ant and Dec, for example, current trustees) by ordinary facilitate the disbursement of statements comply with the Sir Michael Caine and Jeremy were more than twice as likely to resolution. these reserves, the trustees Charities Act 1993. They are Beadle headed up our two be aware that continue to think it prudent to also responsible for summer appeals, raising a leukaemia is the It is the trustees’ policy to work keep the entire fund on short safeguarding the charity’s assets UK’s biggest with other relevant charities and term deposit. and hence taking reasonable child killer during the course of 2004, the steps for the prevention and disease. charity worked closely with the Statement of trustees’ detection of fraud and breaches Leukaemia Research Fund, the responsibilities for the of law and regulations. Great Ormond Street Hospital financial statements Children’s Charity and the Venik Trust. Charity law requires the trustees to prepare financial statements Risk assessment for each financial year which Eddie O’Gorman give a true and fair view of the Chairman of Trustees The trustees keep under regular charity’s incoming resources and review the major risks that could application of resources during 23rd March 2005 affect the achievement of the the year and of its state of affairs charity’s objectives. During the at the end of the year. In Chris Tarrant’s phenomenal year, a risk assessment was preparing those financial 2003 Christmas appeal saw carried out by the charity’s new statements the trustees are funds continuing to accrue internal auditors, Sayer Vincent. required to: until well after Easter 2004. In 2005, it is intended for Sayer

26 CHILDREN with LEUKAEMIA Registered Charity No. 298405. Inaugurated in 1988 by Diana, Princess of Wales in memory of Jean and Paul O’Gorman Independent auditor’s report Statement of financial activities

We have audited the financial Act. Our responsibility is to audit in the preparation of the financial STATEMENT OF FINANCIAL ACTIVITIES FOR THE YEAR ENDED 31 DECEMBER 2004 statements of CHILDREN with the financial statements in statements, and of whether the Total Total LEUKAEMIA on pages 29 to 35 accordance with relevant legal accounting policies are restricted unrestricted Total Total for the year ended 31 December and regulatory requirements and appropriate to the charity's funds funds 2004 2003 Note £ £ £ £ 2004 which comprise the Auditing circumstances, consistently Incoming resources statement of financial activities, Standards. applied and adequately Donations, appeals and fundraising activities the balance sheet, the cash flow disclosed. Spring appeals - 456,185 456,185 149,657 Summer appeals - 1,407,284 1,407,284 830,556 statements and related notes. We report to you our opinion as to Autumn appeals - 322,262 322,262 - These financial statements have whether the financial statements We planned and performed our Christmas appeals - 2,010,473 2,010,473 3,410,511 Standing orders - 466,152 466,152 284,684 been prepared under the give a true and fair view and are audit so as to obtain all the Children’s Marathon Challenge - 1,218,967 1,218,967 1,379,961 historical cost convention, as properly prepared in accordance information and explanations London Marathon and other running events - 1,862,539 1,862,539 1,730,587 modified by the revaluation of with the Charities Act 1993. We which we considered necessary General donations and fundraising 87,775 1,012,302 1,100,077 963,438 Special events - 565,994 565,994 474,770 freehold properties. also report to you, if in our in order to provide us with 87,775 9,322,158 9,409,933 9,224,164 opinion, the Trustees' Annual sufficient evidence to give Other incoming resources 2 - 2,300,000 2,300,000 305,295 This report is made solely to the Report is not consistent with the reasonable assurance that the Legacies - 595,504 595,504 98,038 charity's trustees, as a body, in financial statements, if the charity financial statements are free from Investment income - 110,205 110,205 66,444 accordance with Section 44 of the has not kept proper accounting material misstatement, whether Total incoming resources 87,775 12,327,867 12,415,642 9,693,941 Less: Cost of generating funds 3 Charities Act 1993. Our audit work records or if we have not received caused by fraud or other Fundraising costs - 1,640,327 1,640,327 1,273,760 has been undertaken so that we all the information and irregularity or error. In forming our Publicity costs - 215,471 215,471 179,100 might state to the charity's explanations we require for audit. opinion we also evaluated the Net incoming resources available for trustees those matters we are overall adequacy of the charitable application 87,775 10,472,069 10,559,844 8,241,081 required to state to them in an We read the other information presentation of information in the Charitable expenditure Cost of activities in furtherance of the auditor's report and for no other contained in the Report and financial statements. objects of the charity: purpose. To the fullest extent Accounts of the trustees and Grants to third parties 14 permitted by law, we do not consider whether it is consistent Opinion Relief of children’s suffering 12,000 2,723,664 2,735,664 1,013,429 Research into causes 3,500 1,739,532 1,743,032 148,123 accept or assume responsibility with the audited financial Research into treatment 66,275 1,911,086 1,977,361 2,660,618 to anyone other than the charity's statements. We consider the In our opinion the financial 81,775 6,374,282 6,456,057 3,822,170 trustees as a body, for our audit implications for our report if we statements give a true and fair Campaigns, projects and programmes 3, 15 Relief of children’s suffering 6,000 2,605,366 2,611,366 2,354,027 work, for this report, or for the become aware of any apparent view of the state of the charity's Research into causes - 1,021,970 1,021,970 995,906 opinions we have formed. misstatements or material affairs as at 31 December 2004 Research into treatment - 733,315 733,315 1,009,283 inconsistencies with the financial and of its incoming resources and 6,000 4,360,651 4,366,651 4,359,216 Respective responsibilities of statements. Our responsibilities application of resources in the Management and administration 3 - 54,252 54,252 40,591 trustees and auditors do not extend to other year then ended and have been Total charitable expenditure 87,775 10,789,185 10,876,960 8,221,977 information. properly prepared in accordance Total resources expended 87,775 12,644,983 12,732,758 9,674,837 The trustees' responsibilities for with the Charities Act 1993. Net (resources expended)/ preparing the annual report and Basis of opinion incoming resources before revaluation - (317,116) (317,116) 19,104 the financial statements in Other recognised gains and losses accordance with applicable law We conducted our audit in Gain on revaluation of freehold property 6 - 343,076 343,076 - and United Kingdom Accounting accordance with United Kingdom Standards are set out in the Auditing Standards issued by the UHY Hacker Young Net movement in funds - 25,960 25,960 19,104 Statements of trustees' Auditing Practices Board. An Registered Auditor Fund balance at start of the year - 1,989,639 1,989,639 1,970,535 responsibilities. audit includes examination, on a Chartered Accountants test basis, of evidence relevant to Fund balance at end of the year - 2,015,599 2,015,599 1,989,639 ======We have been appointed as the amounts and disclosures in St. Alphage House auditors under Section 43 of the the financial statements. It also 2 Fore Street All recognised gains and losses have been included in the Statement of Financial Activities and the amounts included are derived Charities Act 1993 and report in includes an assessment of the London EC2Y 5DH entirely from the continuing activities of the charity. accordance with regulations significant estimates and Some of the comparatives have been reclassified to conform to the figures in the current year. This included a movement from donations, appeals and fundraising activities to other incoming resources. made under Section 44 of that judgements made by the trustees 23rd March 2005 The notes on pages 32 to 35 form part of these financial statements.

28 CHILDREN with LEUKAEMIA Registered Charity No. 298405. Inaugurated in 1988 by Diana, Princess of Wales in memory of Jean and Paul O’Gorman Balance sheet Financial activities 2004

Legacies 5% Special BALANCE SHEET AS AT 31 DECEMBER 2004 Resources events 4% 2004 2003 generated 22% Note££££ Standing Fixed assets orders 4% Investments, Tangible assets 6 - 967,294 General Investment in subsidiary 4 100 100 gains & other donations and Current assets fundraising Debtors 7 442,357 551,984 8% Cash at bank and in hand 4,280,704 1,218,132 ______4,723,061 1,770,116 Creditors: amounts Children’s falling due within one year 8 (1,072,591) (747,871) Marathon ______Net current assets 3,650,470 1,022,245 Challenge ______10% London Individual Total assets less current liabilities 3,650,570 1,989,639 Marathon & Appeals other running Creditors: amounts falling events due after more than one year 9 (1,634,971) - ______Net assets 2,015,599 1,989,639 ======14% 33% Represented by: Unrestricted funds 10 2,015,599 1,989,639 ======How the Publicity 2% The notes on pages 32 to 35 form part of the financial statements. resources were Approved and signed on behalf of the Trustees on 23rd March 2005 used 13%

<0.5% Fundraising 42% Management and Relief of administration children’s The Earl Cadogan Eddie O’Gorman suffering Trustee Trustee Research into treatment

21% Research into causes

22%

30 CHILDREN with LEUKAEMIA Registered Charity No. 298405. Inaugurated in 1988 by Diana, Princess of Wales in memory of Jean and Paul O’Gorman Cash flow statement and Notes to the financial statements

2. Other incoming resources 2004 2003 university, it was no longer able to use the building entirely within the charity's ££objects. Therefore the university refunded the original grant of £1.95m plus £0.35m Repayment of Lifeline Building grant 2,300,000 - as an allowance against the part not used in furtherance of the charity's objects to Gift in kind - work performed on Agincourt Road property______- ______305,295 that date. With this payment, the university fully discharged its obligations to the 2,300,000 305,295 charity under the terms of the original grant. However the building will remain CASH FLOW STATEMENT FOR THE YEAR ENDED 31 DECEMBER 2004 ======named the Paul O'Gorman Building and the university will use its reasonable endeavours to locate work within the charity's objects in that building in the future. Note 2004 2003 During the years 1998 to 2002, £1.95m was granted to the University of Bristol in ££order to build the Paul O'Gorman Lifeline Building. Owing to reorganisation at the Net cash inflow from operating activities a) 2,952,367 239,563 3. Total costs Promotion of Relief of research research Fundraising Publicity children into into Management & Interest received 110,205 66,444 Costs Costs suffering causes treatment Administration Total Total Note 2004 2004 2004 2004 2004 2004 2004 2003 ££££££££ Increase in cash in the period b) 3,062,572 306,007 Staff costs 12 104,339 18,926 188,405 122,052 45,780 - 479,502 379,428 ======Direct campaign costs - - 2,422,961 899,918 687,535 - 4,010,414 3,979,788 Printing, postage & stationery 899,025 -----899,025 722,144 Notes to the Cash flow Statement Function and venue costs 628,793 196,545 ----825,338 722,662 Other expenditure 8,170 -----8,1708,054 a) Reconciliation of changes in resources 2004 2003 Audit fee -----19,75019,7507,500 Other office costs ______-----34,50234,50233,091 ______to net cash inflow from operating activities £ £ 1,640,327 215,471 2,611,366 1,021,970 733,315 54,252 6,276,701 5,852,667 Net (resources expended)/incoming resources ======before revaluation (317,116) 19,104 4. Investment in subsidiary 9. Creditors: amounts falling due after more than one year Depreciation - 23,842 CHILDREN with LEUKAEMIA holds 100% of the share capital of Helping Children 2004 2003 with Leukaemia Limited. The net assets of the company as at the year end were ££ Investment income (110,205) (66,444) £100 (2003: £100). Grants payable 1,634,971 - Changes in debtors 109,627 (176,862) The company did not trade during the year. ======Changes in creditors 1,959,690 745,218 5. Trustees' emoluments 10. Statement of funds Grant of tangible fixed assets 1,310,371 - The trustees or any persons connected with them neither received nor waived any At At emoluments during the year. The trustees do not hold indemnity insurance. 1 January Recognised 31 Dec Gift in kind received - (305,295) 2004 Income Expenditure gains 2004 6. Tangible fixed assets Freehold Fixtures & £££££ properties fittings Total 2,952,367 239,563 £££Unrestricted funds 1,989,639 12,327,867 12,644,983 343,076 2,015,599 ======Cost Restricted funds______- ______87,775 ______87,775 ______- ______- b) Analysis of net funds At 1 January 2004 1,048,441 130,174 1,178,615 Total funds 1,989,639 12,415,642 12,732,758 343,073 2,015,599 Revaluation 343,076 - 343,076 ======1 January Cashflow 31 December Disposals (1,391,517)______(130,174) (1,521,691) ______2004 £ £ 2004 £ At 31 December 2004 - - - The restricted funds comprised donations given from Trust Funds to be spent on ______specific projects and these funds were all discharged during 2004, £81,775 on Depreciation grants to third parties and £6,000 on campaigns, projects and programmes. At 1 January 2004 169,774 41,547 211,321 Cash at bank and in hand 1,218,132 3,062,572 4,280,704 Disposals (169,774) (41,547) (211,321) ======______11. Analysis of net assets by funds At 31 December 2004______- ______- ______- Total Total Net book values Unrestricted Restricted funds funds At 31 December 2004 - - - funds funds 2004 2003 NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2004 ======££££ At 31 December 2003 878,667 88,627 967,294 Fixed assets 100 - 100 967,394 1. Accounting policies approved by the trustees and agreed with the other organisations. Payment is ======Net current assets 3,650,470 - 3,650,470 1,022,245 (a) Accounting conventions made when the conditions of the grant have been met. Creditors: more than one year (1,634,971) - (1,634,971) - The financial statements are prepared in accordance with applicable accounting Expenditure on campaigns, projects and programmes is included when incurred. Paul O’Gorman House, Agincourt Road was transferred to the Royal Free Hospital ______standards, the Charities (Accounts and Reports) Regulations 2000 and the related The majority of the costs are directly attributable to specific activities. Other during the year (net book value £710,370 including fixtures & fittings). 2,015,599 - 2,015,599 1,989,639 Statement of Recommended Practice for Accounting and Reporting by Charities indirect costs are apportioned to activities in accordance with staff activity and an ======(SORP) published in October 2000 in all material respects and are prepared under assessment of where the resources have been applied. The remaining property, the Paul O’Gorman Respite Centre (Green Hedges), was the historical cost convention, as modified by the revaluation of freehold externally valued by Holland Alexander & Co Limited on the basis of open market 12. Staff costs 2004 2003 properties. (e) Fundraising costs value as defined by the Appraisal and Valuation Manual issued by the Royal ££ The charity owns the whole of the share capital of Helping Children with Leukaemia These costs include the direct expenditure and overhead costs relating to the Institution of Chartered Surveyors. The open market value of this property was Salaries and wages 433,180 340,049 Limited, a company registered in England. The company was dormant throughout appeals and fundraising functions. They also include the allocation of costs £600,000. The net book value of this property (including associated fixtures & National Insurance 46,322 39,379 the current and previous years. In the opinion of the trustees, the company is not incurred to support and co-ordinate fundraising activities. fittings) was £256,924. This property, along with associated fixtures and fittings, ______material in the context of the overall accounts and therefore, the consolidated was subsequently granted to Venik Trust. 479,502 379,428 financial statements have not been prepared. (f) Publicity costs ======The particular accounting policies adopted by the trustees are described below: These are costs incurred in promoting the charity’s aim, objectives and fundraising. 7. Debtors 2004 2003 In part, they support the charitable activities but cannot be precisely allocated to ££One employee earned between £100,000 and £110,000 during the year. (b) Tangible fixed assets specific programmes. Trade debtors 53,270 - Tangible fixed assets costing more than £10,000 are capitalised and included at Other debtors 115,592 551,984 The average weekly number of employees during the year, as calculated on a full cost including any incidental costs of acquisition. (g) Management and administration costs Accrued income______273,495 ______- time equivalent basis, was as follows: Depreciation is provided at rates calculated to write off the cost less estimated This represents costs incurred to manage the charity in compliance with 442,357 551,984 residual value, of each asset over its expected useful life, as follows: constitutional and statutory requirements. ======Number of employees Freehold property 4% straight line 2004 2003 Fixtures and fittings 15% straight line (h) Fund accounting Accrued income represents legacies, as the charity has been formally notified by Unrestricted funds are available for use at the discretion of the trustees in the personal representative of the estates. The trustees are reasonably certain that 14 11 (c) Incoming resources furtherance of the general objectives of the charity and have not been designated amounts in respect of these legacies will be received after the year end. ======Income is recognised in the period in which the charity is entitled to receipt and the for other purposes. amount can be measured with reasonable certainty. Restricted funds are funds which are to be used in accordance with specific 8. Creditors: amounts falling due within one year 2004 2003 All employees contributed to fundraising campaigns, projects and programmes In accordance with this policy, legacies are included when the charity is advised by restrictions imposed by donors or which have been raised by the charity for ££and the management and administration of the charity. the personal representative of an estate that payment will be made or property particular purposes. The costs of raising and administering such funds are charged Trade creditors 637 - transferred and the amount involved can be quantified. against the specific fund. Sundry creditors - 745,371 13. Capital commitments Voluntary income in the form of donations, proceeds of appeals and other Taxes and social security 28,357 - fundraising activities are recognised upon receipt. (i) Taxation Grants payable 1,032,597 - There were no capital commitments at CHILDREN with LEUKAEMIA is a registered charity whose income is not subject to Accruals______11,000 ______2,500 31 December 2004 (2003: Nil). (d) Resources expended and basis of allocation of costs income tax. 1,072,591 747,871 Grants to third parties are included in the Statement of Financial Activities when ======32 CHILDREN with LEUKAEMIA Registered Charity No. 298405. Inaugurated in 1988 by Diana, Princess of Wales in memory of Jean and Paul O’Gorman 34 Notes to the Financial Statements continued

Promotion of Relief of research research children into into suffering causes treatment Total 2004 2004 2004 2003 14. Grants to third parties ££££ Professor Denis Henshaw, The Paul O’Gorman Childhood Leukaemia Centre, Physics Department, University of Bristol. Programme funding – research into the possible environmental causes of childhood leukaemia - 1,322,309 - 54,000 Great Ormond Street Hospital Children’s Charity. Capital funding for the Paul O’Gorman Patient Hotel, London 1,000,000 - - - Lifeline Italia and Bone Marrow Transplantation Units, various hospitals. Lifeline: treatment of leukaemic children from Eastern Europe in specialist centres in Western Europe 800,664 - - 169,558 Dr Nicholas Goulden, Paul O’Gorman Building, Bristol Royal Hospital for Children. Project funding – national trials of a new test for detecting presence of leukaemia cells during treatment† - - 666,422 271,119 Dr Hugh Brady, The Paul O’Gorman Childhood Leukaemia Research Centre, Great Ormond Street Hospital, London. Programme funding – research into improved treatments for infant leukaemia - - 666,372 1,094,918 The Venik Trust. Grant of Paul O’Gorman Respite Centre (Green Hedges) and running costs 635,000 - - - University of Newcastle Medical School. Capital funding for the new Northern Institute of Cancer Research, Paul O’Gorman Building† - - 400,000 400,000 University of Glasgow, Strathclyde. Capital funding for the new Paul O’Gorman Leukaemia Research Centre† - - 200,000 100,000 Alasdair Philips, Powerwatch. Project funding – development of on-line scientific database of research relating to the possible causes of childhood cancer - 175,000 - 21,000 Royal Free Hospital London. Running costs of Paul O’Gorman House (parental accommodation facility) 140,000 - - 35,000 CHASE Hospice Care for Children. Towards costs of providing services for the families of children with leukaemia 100,000 - - - Various beneficiaries. Paul O’Gorman science award grants. Six grants of £15,000 each – see Trustees’ Report - 90,000 - - Coghill Research Laboratories, Gwent. Capital funding for new laboratory - 60,523 - The Variety Club of Great Britain. To fund two children’s nurses 60,000 - - 60,000 Professor Michel Coleman, Non-Communicable Disease Epidemiology Unit, London School of Hygiene & Tropical Medicine. For analysis of incidence trends in childhood leukaemia - 45,000 - - Dr Craig Donaldson, University of the West of England. Project funding – a preliminary study of human NKT cells in stem cell transplant recipients - - 39,567 23,581 Professor Alan Preece, Oncology and Medical Physics Department, University of Bristol. Project funding – epidemiological study into association between power lines and childhood cancers - 29,800 - 58,123 Alasdair Phillips, Powerwatch. Ongoing research expenses – electromagnetic fields and childhood leukaemia - 15,400 - 15,000 Dr Mike Sury, Great Ormond Street Hospital for Children. Project funding – ultra-short acting anaesthesia for intrathecal chemotherapy in children - - 5,000 - World Cancer Research Fund. For provision of educational materials on the causes of leukaemia to the Metropolitan Police - 5,000 - - Royal Free Hospital, London. Gift of Paul O'Gorman House - - - 726,371 University College London. Capital grant towards new Paul O’Gorman Building to accommodate Institute of Cancer Sciences - - - 500,000 Molecular Imaging Centre, University of Manchester. Capital support of new blood scanning laboratory - - - 250,000 Coghill Research Laboratories, Gwent. Project funding - research into the role of benzoquinones in treating leukaemia - - - 21,000 The DIPex Charity. Towards the provision of an internet based resource for patients diagnosed with leukaemia - - - 12,000 CLIC. Towards welfare and care services - - - 10,000 Chernobyl Children’s Lifeline. Towards the relief of children affected by radiation in Chernobyl - - - 500 ______Total grants to third parties 2,735,664 1,743,032 1,977,361 ______Grand total 6,456,057 3,822,170 ======

Grants are generally awarded to the host institution in respect of research programmes carried out by the individuals named above.

† Grant administered by the Leukaemia Research Fund (Registered charity No. 216032).

15. Campaign, project and programme costs

The Paul O’Gorman Parental Home, Royal Free Hospital, London 10,299 - - 6,979 The Paul O’Gorman Recuperation Centre, Green Hedges, Angmering-On-Sea, West Sussex 38,443 - - 15,000 Welfare services 172,913 - - 240,503 Summer Awareness Campaign 445,297 23,984 23,984 456,780 Autumn Awareness Campaign 434,166 - - - Winter Awareness Campaign 643,502 386,095 386,095 2,497,838 Relief Promotional Programmes 359,627 - - 255,001 Schools Education Project 507,119 - - 379,682 International Scientific Conference - 391,313 - - Treatment and Cure Awareness Programmes - 220,578 - 247,028 Childhood Leukaemia Research Promotion Activities - - 323,236 260,405 ______Total campaigns, projects and programmes 2,611,366______1,021,970 ______733,315

Grand total 4,366,651 4,359,216 ======

35 CHILDREN with LEUKAEMIA Registered Charity No. 298405. Inaugurated in 1988 by Diana, Princess of Wales in memory of Jean and Paul O’Gorman