Annual Report & Accounts 2008 CHILDREN with LEUKAEMIA Registered Charity No. 298405. Inaugurated in 1988 by Diana, Princess of Wales in memory of Jean and Paul O’Gorman Introduction Paul and Jean, Royal Free Hospital, Hampstead Diana, Princess of Wales inaugurates the Charity, New Year’s Day 1987 12th January 1988 How we began The charity began in memory Paul succumbed to the disease Spurred by the loss of their of Paul O’Gorman, who was 14 in February 1987, nine weeks beloved children, Marion and when he was diagnosed with after his initial diagnosis. Eddie, along with family and leukaemia, in December 1986. friends, undertook the mission Just before he died, Paul asked His parents, Marion and Eddie, to fulfil Paul’s wish and continue his parents to help other were initially encouraged by the Jean’s work - to give children children with leukaemia in the consultant’s opinion that his with leukaemia a better chance hope that some day a cure chances of survival were good, as of survival. a suitable donor had been found would be found. for a bone marrow transplant. A week after Jean’s death, Paul’s sister, Jean, immediately Marion and Eddie met Diana, However, while waiting for the began a fundraising campaign Princess of Wales. Moved by operation, Paul contracted a virus to honour Paul’s wish but their double tragedy, she helped and his condition deteriorated. tragedy struck the O’Gorman start the charity, which she In hospital, Paul observed the family again. inaugurated in January 1988. devastating treatments other In November 1987, nine months children with leukaemia had to Princess Diana’s commitment endure and how they managed after Paul’s death and only days remained undiminished. She to cope with great courage and after her first major fundraising was supportive of our work until patience. event, Jean, aged 29, also died. her own tragic death. www.leukaemia.org/about-us 2 Foreword by the chairman 2008 was a landmark year for us, as the total income we have raised since our inauguration in 1988 surpassed £100 million, enabling us to fund CHILDREN with LEUKAEMIA Annual total income major advances in treatment, world- £14 million class research and much needed welfare programmes. However £12 million successful, we are just as motivated £10 million now, as we were twenty-one years £8 million ago, to advance the understanding of the causes and potential £6 million prevention of childhood leukaemia. £4 million £2 million 2009 will be a challenging year as we rely solely on voluntary donations £0 million 19981999 2000 2001 2002 2003 2004 2005 2006 2007 2008 from the public and, like other charities, we must be evermore Year cautious with our disbursements. Therefore, despite the prevalent general economic uncertainties, we shall continue to consider grants to eminent third parties who need urgent help with their essential work. Number of deaths due to childhood leukaemia aged 0 to 14 Our ultimate aim is for all children 140 diagnosed with leukaemia to be 120 cured with minimum disruption to their lives and we will continue the 100 fight against the most common 80 childhood cancer in our country, by 60 building on the firm foundations we number of deaths 40 have already established. 20 0 1998 1999 2000 2001 2002 2003 2004 2005 2006 2007 Year Source: Office for National Statistics (ONS). Eddie O’Gorman Figures for 2008 are not yet available and figures for Scotland and Chairman of the Trustees Northern Ireland are not available from the ONS. CHILDREN with LEUKAEMIA Registered Charity No. 298405. Inaugurated in 1988 by Diana, Princess of Wales in memory of Jean and Paul O’Gorman Review of the year How we performed against our objectives A year ago we set out goals for the following twelve months and on these pages we set out in summary how we have performed against each of them. These achievements are organised into groups, each headed by the wording of the relevant charitable object – the part of our constitution that sets out why we exist. Research – pages 6 to 13 We said that we would raise the remaining £511,094 To promote research into the causes, alleviation, for the final year grant towards the MRD study. prevention, treatment and cure of leukaemia or Although we felt the bite of the credit crunch in the any other form of cancer (and allied disorders) second half of the year, we still had a successful affecting children and young people and to year overall on the fundraising front. Thanks to the publish the useful results of such research. ongoing generosity of our supporters we were able In 2008 we planned to review our programme grant to grant the final instalment of MRD funding in at the University of Bristol. Professor Henshaw’s March. renewal application was subjected to wide-ranging We were expecting to see the opening of the new peer review, which culminated in a site visit in June. Paul O’Gorman Leukaemia Research facility at the Funding of £471,438 was awarded to take forward University of Glasgow. As planned, this opened in their work on power lines and childhood leukaemia. May giving both clinicians and researchers access to A further objective was to review, and if appropriate the most up to date facilities and equipment and renew, our programme grant at the Institute of Child bringing together teams who had previously been Health. A sub-committee of our Scientific Advisory scattered across several different university sites. Committee led this process which resulted in the In 2009, we will seek to fund more scientific award of just over £1.1 million for exciting new initiatives that will advance treatments and our research at the Institute (see page 10). understanding of childhood leukaemia. We said that we would continue to work closely with the Childhood Leukaemia International Consortium. And in 2008 we made a further grant of $20,000 to Welfare – page 15 fund the meeting costs of the Consortium which is To promote the relief of children and young bringing together scientists from all over the world – people suffering with leukaemia or any other including representatives of 14 studies of childhood form of cancer (and allied disorders) and of their leukaemia spread across 10 countries - to try to families; work out what causes childhood leukaemia. We were expecting to see the opening in 2008 of We planned to fund more scientific initiatives that will Paul’s House, a home-from-home for families of advance our understanding of childhood leukaemia children being treated at UCLH. Unfortunately work and to run a conference on the causes and prevention on this much-needed new facility has been delayed of childhood leukaemia. We achieved both of these objectives. The conference took place in April, chaired and it is not expected to open until 2010. by Professor Eric Wright. The grant round was But we are pleased to report that we paid our final launched in June, culminating with the award of six grant instalment towards the redevelopment of new project grants in December (see page 12). treatment facilities for leukaemia patients at Great 4 Ormond Street Hospital. This mammoth project, to Fundraising – pages 16 to 21 which we have now contributed £2.4 million, was None of the above achievements would have been completed in 2008 and patients, parents and staff possible without the fundraising that underpins are now enjoying their new, more comfortable everything we do. In 2008 we aimed to take our all surroundings. time income total through the £100 million barrier. In 2009, we will continue to work closely with CLIC And we are delighted to report that we exceeded Sargent and commit a further £200,000 towards this. By year end our total income raised to date welfare projects. We will also continue our stood at more than £107 million. partnership with the Paul O'Gorman Lifeline Charity Overall our income was down on the previous year. to support its work in caring for children with This was attributable in part to some large one-off leukaemia from Eastern Europe. payments received in 2007, including a legacy of £225,000, as well as the difficult economic climate Raising awareness – page 14 that saw income from some activities fall. To raise public awareness and knowledge in Income from running events was maintained at 2007 matters relating to leukaemia or any other form levels despite the difficult economic climate, of cancer (and allied disorders) affecting children representing more than one quarter of income and young people; and Research overall. We stepped up the marketing on our popular In 2008 we have continued to work with policy children’s challenges and achieved growth of almost makers to raise awareness of the risks associated 20% in income – to more than £920,000. with living close to high voltage power lines, taking We are pleased to report that our committed giving forward the recommendations of the 2007 Cross income rose by almost 12% - to just over £1 million Party Inquiry into Childhood Leukaemia and – 9% of our total income. This is an important Extremely Low Frequency Electric and Magnetic income stream that we can rely on from year to year, Fields (ELF EMF). Our efforts have resulted in with low associated costs. Knowing that we have significant parliamentary time (in Committee and on this regular income helps us to plan ahead with the floor of both Houses) being devoted to EMF and greater confidence. childhood leukaemia. Despite the challenging economic climate, we will aim In 2009, we will continue our campaign to ensure the to take our income through the £115m mark since the government brings forward substantive measures to Charity was first inaugurated in 1988.