& Accounts 2005 Annual Report - Children With Cancer UK · Leukaemia is cancer of the blood. ......

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

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]: www.leukaemia.org www.runleukaemia.org www.challengeleukaemia.org

Paul’s and Jean’s first school photographs

Fighting Britain’s biggest child killer disease

Annual Report & Accounts 2005

Registered Charity No. 298405. Inaugurated in 1988 by Diana, Princess of Wales in memory of Jean and Paul O’GormanCHILDREN with LEUKAEMIAFighting Britain’s biggest child killer disease

Leukaemia is cancer of the blood. It is the mostcommon childhood cancer and, despite enormousadvances in treatment, it remains a devastatingdisease, killing one in every four children who arediagnosed. The number of new cases is risingevery year and we don’t know why.

Paul O’Gorman was 14 years old when he wasdiagnosed with leukaemia. He died only threemonths later – in February 1987.

Paul had made his parents promise to help otherchildren with leukaemia and in November 1987they held their first fundraising ball. Their mostdedicated fundraiser, Paul’s sister Jean, insisted

on attending even though she herself was criticallyill with cancer and was to die only two days later.

Shortly after Jean’s death, Eddie and MarionO’Gorman met Diana, Princess of Wales. Deeplymoved by their double tragedy, she personallyhelped start this charity which she inaugurated inJanuary 1988.

What began as a small memorial charity is nowBritain’s leading charity dedicated to the conquestof childhood leukaemia through pioneeringresearch, new treatment and support of leukaemicchildren and their families. The indomitable spirit ofPaul and Jean continues to inspire our work.


Foreword by the ChairmanAbout CHILDREN with LEUKAEMIA

I am pleased to record that,despite our 2005 fundraising beingseverely affected by the Tsunamiappeal, we sustained our annualincome at over £10 million.

The continued increase in thenumber of children surviving leukaemia is a greattestament to the skill and dedication of thescientists and doctors who continually strive toimprove treatments and care - and to years ofinvestment in leukaemia research. The minimalresidual disease project - funded in partnershipbetween CHILDREN with LEUKAEMIA and theLeukaemia Research Fund - is the single mostimportant development in leukaemia treatmentsince the development of combination therapies inthe 1960s. I am delighted that we will now befunding this work through to its completion in 2009.

Despite these encouraging developments intreatment, the growth in the number of childrendeveloping the disease every year is of enormousconcern. We are determined to get to the bottom ofthis increasing incidence and have sustained ourfocus on causes throughout 2005. In May weawarded 12 grants for new projects focused oncauses. These outstanding projects hold realpromise of advancing our knowledge and may helpus to reverse the increasing incidence. We havealready started the application process for a furtherround of grants for causes projects in 2006 andexpect to announce the awards towards the end ofthe year.

We continue to invest substantially in welfareprojects - to ease the strain on family life. We havenow completed our commitment to Great OrmondStreet Hospital for the new patient hotel which isproviding such wonderful facilities to familiestravelling to London for treatment. And we haveembarked on a new partnership with the team atGOSH to help fund the expansion of their inpatientcancer facilities.

We are making progress in our campaign for betterprotection against the dangers of exposure to

electric and magnetic fields, a well-established riskfactor for childhood leukaemia. As well asparticipating in SAGE, the stakeholder advisorygroup established by the Department of Health, wehave been carrying out a range of other activitiesdesigned to draw attention to the issue andencourage the implementation of protectivemeasures against this very real risk to health.

We continue to develop and improve thegovernance of the charity. The death of Lord MarkCarlisle in 2005 was an enormous blow to us all.Mark became a trustee in 1991 and made atremendous contribution during his 14 years inoffice. We have strengthened the trustee board withthe recruitment of four new trustees - ProfessorDenis Henshaw, Sandra Mileham, BaronessMorgan of Drefelin and Linda Robson - each ofwhom brings new and important skills and talentsto the Board.

We have also strengthened the staff team, with theintroduction of two new posts. Dr Adrienne Morganjoined us as Staff Scientist in February 2006 andPeter Reynolds joined us as Deputy ChiefExecutive in June 2006. Both of these posts willsubstantially enhance our ability to meet ourcharitable objectives and I am delighted towelcome Adrienne and Peter to the team.

As ever, we are indebted to our friends, staff,volunteers and supporters whose continuingdedication has made possible the vital workdescribed in this report. On behalf of the trustees Iwould like to record our gratitude for their hardwork. I hope that we can continue to count on theirsupport in the years ahead. There is much still to do.

Eddie O’Gorman

Chairman of Trustees

4th July 2006

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Community children’s nurses inCornwall and Tyne and Wear.

CHASE Hospice, Surrey. To support theprovision of services for children withleukaemia.

Sussex Snowdrop Trust. To support theprovision of services for children withleukaemia.

Paul O’Gorman Respite Centre,Angmering on Sea.

Professor Eric Wright, University of DundeeMedical School. Investigations of microenviron-mentally-mediated damage as a promotionalfactor in childhood leukaemia.

Northern Institute of Cancer Research, PaulO’Gorman Building, University of Newcastle.

Dr Tevfik Dorak, University of Newcastle.Genes influencing body iron content andchildhood leukaemia risk.

Dr Richard Feltbower, University of Leeds.Does population mixing measure infectiousexposure at the community level?

Minimal residual disease study, SheffieldChildren’s Hospital.

Paul O’Gorman Patient Hotel, GreatOrmond Street Hospital for Children, London.

Paul O’Gorman Leukaemia ResearchCentre, Institute of Child Health, London.

Institute of Cancer Sciences, Paul O’GormanBuilding, University College London (due toopen in 2006).

Expansion of Haematology and OncologyServices, Great Ormond Street Hospital, London.

Paul O’Gorman House. Parentalaccommodation facility at the Royal FreeHospital, London.

Laboratory of Cellular Therapeutics, PaulO’Gorman ChildhoodLeukaemia Centre, Royal FreeHospital, London.

Dr Hugh Brady. PaulO’Gorman LeukaemiaResearch Centre, Institute ofChild Health, London. The roleof MLL in the molecular

pathogenesis of infant andchildhood leukaemia.

Dr Paul Veys & Dr PersisAmrolia. Great Ormond StreetHospital, London. Anti CD34immunotoxin study.

Minimal residual disease study,Hammersmith Hospital, London.

Home from Home, Middlesex Hospital,London (due to open summer 2007).

Professor Mel Greaves, Institute of CancerResearch, London. Collateral DNA damage

as an indicator of prior aetiological exposuresin infant leukaemia.

Dr Mike Murphy, Childhood CancerResearch Group, University of Oxford.

Programme funding - studies into risk factorsfor childhood leukaemia.

Paul O’Gorman LeukaemiaResearch Centre, University ofGlasgow (due to open in 2007).

Minimal residual disease study,Royal Hospital for Sick Children,Glasgow.

Young Oncology Unit, ChristieHospital, Manchester.

Paul O’Gorman BloodLaboratory, Wolfson MolecularImaging Centre, University ofManchester.

Paul O’Gorman Molecular DiagnosticLaboratory, The Paterson Institute, ChristieHospital, Manchester (due to open in 2006).

DNA sequencer, Cancer ImmunogeneticsLaboratory, University of Manchester.

Dr Ketal Patel, MRC Laboratory ofMolecular Biology, Cambridge. Identificationand characterisation of novel genes thatfunction in the Fanconi anaemia tumoursuppressor pathway.

Alasdair Philips, Cambridge. An explorationof the possible causes of childhood leukaemiaand other cancers.

Paul O’Gorman Laboratory, CoghillResearch Laboratories, Gwent.

Professor Nick Priest, University ofMiddlesex. Environmental radioactivity as acause of leukaemia in a high radiation areawithin central Asia: feasibility study.

Paul O’Gorman Building, Bristol RoyalHospital for Children.

Professor Denis Henshaw, HumanRadiation Effects Group, University ofBristol. Programme funding –studies into environmental riskfactors for childhood leukaemia.

Minimal residual disease study, University ofBristol/ Bristol Royal Hospital for Children.

Dr Craig Donaldson, University of the Westof England. A study of human NKT cells in stemcell transplant recipients.

Professor Alan Preece, Bristol Haematologyand Oncology Centre. Programme funding –studies of the association between childhoodleukaemia and proximity to power lines.

KEYResearch facilitiesResearch projectsWelfare projects

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CHILDREN with LEUKAEMIA around BritainOur aims and objectives

Our objectives

1. We will fund high quality research aimed at developing treatmentswhich are not only more effective but are also less debilitating anddisruptive to children’s lives.

2. We will fund high quality research aimed at improving ourknowledge about the causes of childhood leukaemia.

3. We will provide capital funding to encourage the development ofcentres of excellence in childhood leukaemia research.

4. We will take forward the results of relevant research so that theknowledge gained can be used to best effect.

5. We will raise public awareness about issues of concern and seekto influence the development of policy to promote the best interestsof children with leukaemia or at risk of leukaemia.

6. We will support welfare initiatives to minimise the difficulties anddisruptions caused by treatment.

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Our aims

We aim to conquer childhood leukaemia. We want all children diagnosed with leukaemia to be cured andfor the cure to be effected with minimum disruption to their lives. Further we want to understand whatcauses children to develop leukaemia so that the rising incidence can be halted and reversed.


Objective 1. We will fund high quality research aimed at developing treatments which are not only more effective but are alsoless debilitating and disruptive to children’s lives.

Our achievements in 2005:

• Dr Nicholas Goulden, Bristol Royal Hospitalfor Children. Stratification of chemotherapybased on levels of minimal residual disease.Funding of £392,228 was granted in support of yearfour of this ground-breaking project, taking our totalfunding of this work to £1.83 million. See page 8 forfurther details of Dr Goulden’s project.

• Dr Craig Donaldson, University of the Westof England. Dr Donaldson and colleagues arestudying an important cell in our immune systemcalled the Natural Killer T-cell (NKT-cell). This cell isinvolved in an important and beneficial side-effectcalled Graft vs Leukaemia in which stem cellstransplanted from a donor help to kill the leukaemiacells remaining in the patient’s bone marrow. Theteam are trying to find out more about how theNKT-cells work and, in particular, how to encouragethe rapid recovery of the cells post-transplant. Wemade a grant of £94,140 to enable the team tocontinue this work for a further two years.

• Dr Paul Veys and Dr Persis Amrolia, GreatOrmond Street Hospital for Children. Thisteam is trying to develop a new, less toxic methodof preparing children for stem cell transplantation.At the moment, powerful chemotherapy orradiotherapy must be used to destroy the patient’sown bone marrow and create space for thedonated marrow cells. Unfortunately thesetreatments can damage the patient’s other organs,causing life-threatening side-effects. Drs Veys andAmrolia are developing a new way of destroyingthe patient’s marrow, by using an antibody thatrecognises bone marrow cells and linking it to atoxin which will kill them. Because this"immunotoxin" binds only to marrow cells it shouldkill them specifically, without causing damage toother tissues. We made a grant of £17,000 to payfor the laboratory consumables required for thiswork.

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Our plans for 2006:

• The plans for years four to six of the minimalresidual disease study (led by Dr Nicholas Gouldenin Bristol) have now been approved by theLeukaemia Research Fund scientific board. Wehave undertaken to raise the £1.7 million necessaryto meet the cost of this work. We paid the firstinstalment of £619,267 in March 2006.

• We are in discussion with the London Cord BloodConsortium about a possible collaboration to helptake forward their work to improve umbilical cordstem cell transplantation.

• We will work with the scientists we fund, ourscientific advisory panel and others working in the

field – especially the Leukaemia Research Fund,with whom we have enjoyed a close collaborationfor 18 years now - to identify new areas of workwhich could lead to benefits in the treatment andcare of children with leukaemia. We will look atways of improving the effectiveness of our grant-making in this field.

• We will continue to monitor all of the treatment-related work funded by us including the projectsmentioned on the facing page and the infantleukaemia programme which we fund at theInstitute of Child Health (under Dr Hugh Brady). Atthe time of writing, we have already begun aprogramme of visiting funded projects.

Three out of four children diagnosed with leukaemia now survive. This is incredibleprogress considering that only 50 years ago a diagnosis of leukaemia wastantamount to a death sentence for every child who was diagnosed. However it isnot progress enough for the one child in four who does not survive and we willcontinue to fund research aimed at developing treatments for those forms ofchildhood leukaemia which still elude successful treatment.

As well as developing treatments which are more effective, we are workingtowards the development of treatments which are less disruptive to children’slives. Children diagnosed with leukaemia are initially given high doses of toxicdrugs to rid their bodies of the deadly cancer cells. This is followed by furtherbursts of intensive therapy to ensure that all leukaemia cells have been destroyedand then lower dose maintenance therapy to prevent the disease from returning.This entails frequent trips to hospital, with the child often admitted for weeks at atime. Some children will also require a stem cell (bone marrow) transplant to helpthem recover.


Case Study

Every child will have some leukaemia cellsremaining in their bone marrow when they achieveremission (the point at which their disease isconsidered to have been brought under control).These remaining cells are known as minimalresidual disease (MRD). Previous studies indicatethat the precise level of MRD is a reliable predictorof relapse risk, however the number of cells is sosmall – often less than one leukaemia cell in 10,000normal cells – that it is not possible to detect themunder the microscope.

Dr Goulden likens the bone marrow to a factorywhich produces blood cells. In leukaemia, one ofthe production lines is malfunctioning and isproducing faulty cells in such huge numbers thatthe whole factory is overwhelmed and the otherproduction lines can’t continue making normalblood cells. Chemotherapy is used to shut downthe faulty production line. This destroys most ofthe leukaemia cells and allows the bone marrow tostart producing normal blood cells again. But someof the leukaemia cells are hiding around the factoryand every so often they may jump out and startcausing havoc again. These cells are the MRD.There may be just one or two cells hiding in thecupboards, in which case the child is at low risk ofrelapse. Or there may be hundreds of them, inwhich case the child is at high risk of relapse andneeds more intensive treatment to get rid of allthese cells and prevent them from taking over thefactory again.

This national study is using a new moleculartechnique which enables scientists to find andmeasure the remaining leukaemia cells – theequivalent of going looking in the cupboards. Thetechnique involves the development of uniquemolecular markers for each child’s leukaemia cellsfrom bone marrow samples taken at the time ofdiagnosis. These markers are then used to screensubsequent samples taken from that child.

The team aims to establish whether relapse can beavoided in children found to have a high level ofMRD at day 28 by intensifying their treatment atthis early stage; and whether children found tohave a low level of MRD at day 28 can receivelower doses of chemotherapy, minimising their riskof treatment-related side-effects withoutcompromising their chance of a cure.

More than 800 children have so far commencedtreatment under the trial, which is now in its fourthyear. Even at clinical trial stage, it is likely that thistechnique has already saved young lives. We areconfident that within the next three years, thistechnique will become part of standard NHSpractice.

CHILDREN with LEUKAEMIA has so farcontributed £2.45 million to the project and wehave undertaken to raise a further £1 million totake it through to completion.

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Objective 1. We will fund high quality research aimed at developing treatments which are not only more effective but are alsoless debilitating and disruptive to children’s lives.

Stratification of chemotherapy based on levels of minimal residual disease

Dr Nicholas Goulden, Bristol Royal Hospital for Children


Objective 2. We will fund high quality research aimed at improving our knowledge about the causes of childhood leukaemia.

Although improvements in the treatment ofchildhood leukaemia are one of the great medicalsuccess stories of the 20th century we still knowvery little about what causes children to developleukaemia in the first place.

Over the same period during which the proportionof childhood leukaemia cases resulting in deathhas been decreasing, the number of new caseshas been steadily increasing, making it imperativethat we prioritise efforts to understand the causesof the disease.


During our successful 2004 internationalconference on the causes of childhood leukaemiawe announced new funding of £1 million forprojects investigating causes. In May 2005 ourgrants panel awarded funding to 12 projects – outof the 43 applications submitted - at a total cost of£1.05 million.

The funded projects are those which were felt tooffer the best hope of advancing our knowledge ofthe causes of childhood leukaemia. The projectscover a diverse range of factors purported to belinked to childhood leukaemia includingenvironmental and lifestyle factors such asradiation, electricity, diet and infection as well asstudies of the genetic mutations which areinvolved in leukaemia development. The 12projects are described on the following pages.

This was the first time we have run such a grantround ourselves and we put a great deal of effortinto ensuring that we had rigorous procedures inplace for scrutinising the applications received.Our acceptance into the Association of MedicalResearch Charities (AMRC) in 2005 shows that weachieved this aim. The AMRC lays down minimumstandards of good practice to which membercharities must adhere, including policies on peerreview and other aspects of grant-making. To beeligible for membership, charities must be able todemonstrate that they meet these criteria.

New grants for research into thecauses of childhood leukaemia

Dr Vladimir Binhi, Russian Academy ofScience. "Theoretical study of the role ofmagnetic nano-particles in the transductionof weak alternating and slow variablemagnetic fields to the level of biochemicalreactions"We awarded £20,490 to Dr Binhi to investigate thepossible role that the tiny magnetic particles in ourbrains play in mediating a biological reaction tomagnetic field exposure.

Although exposure to magnetic fields has beenshown to increase the risk of childhood leukaemia,there is so far no well-established biologicalmechanism to explain this increased risk. It hasbeen shown, however, that the human braincontains tiny magnetic particles which respond tomagnetic fields. These may play a role in mediatingthe interaction of magnetic fields with the humanbody.

Dr Binhi will carry out an analysis of the literatureand conduct an original theoretical study toattempt to clarify the role of these particles inrelation to their ability to change the rates ofcertain biochemical reactions which regulate theimmune system. He will use this information tocreate a theoretical model to advance ourunderstanding of whether external magnetic fieldscan alter immune function and induce leukaemicchanges. This model will provide a template uponwhich to base laboratory research efforts and willhelp us to identify which characteristics ofmagnetic fields should be measured in futureepidemiological studies.

Professor Gladys Block, University ofCalifornia, Berkeley. "Effect of maternal andchild diet and folate metabolism genevariants on childhood leukaemia risk" We awarded £133,022 to Professor Block for thisproject looking at the interplay between diet andgenetic factors.

Diet has been linked to childhood leukaemia in anumber of studies although maternal diet and earlychildhood diet have never been comprehensivelyexamined. In this study Professor Block will carryout a detailed analysis using data from theNorthern California Childhood Leukemia Study(NCCLS). She will focus on folate, known to beimportant in the development and maintenance ofhealthy cells, building upon existing data from theNCCLS to examine the role of genes involved inthe metabolism of folate.

Professor Patricia Buffler, University ofCalifornia, Berkeley. "Individual geneticsusceptibility and environmental exposuresin the aetiology of childhood leukaemia"Professor Buffler was awarded £110,106 to look atthe effect of genetic make-up on a child’svulnerability to certain environmental carcinogens. Many studies have looked for associationsbetween childhood leukaemia and exposure toenvironmental factors such as parental smoking,vehicle emissions and pesticides and the literatureis generally supportive of a link.

Professor Buffler proposes that some children aremore vulnerable to the effects of environmentalcarcinogens because of their genetic make-up,something that few studies have so far taken intoaccount. Using new molecular genetic techniques,Professor Buffler will use data from the NCCLS toexamine whether variation in the expression ofgenes known to be involved in the metabolism ofenvironmental carcinogens – in both the motherand the child - are associated with childhoodleukaemia. She will go on to examine whethervariation in these genes modifies the associationbetween exposure to these environmentalcarcinogens and childhood leukaemia.

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Dr M Tevfik Dorak, Paul O’Gorman Building,University of Newcastle upon Tyne. "Genesinfluencing body iron content and childhoodleukaemia risk"Dr Dorak was granted £93,532 to investigate theassociation between childhood leukaemia risk anda genetic mutation (HFE-C282Y) known to affectbody iron content.

Whilst the connection between increased body ironcontent and cancer risk has been repeatedlydemonstrated in adults, no study has examinedwhether the same risk applies to children. However,an association has been found between the HFEmutation, which increases body iron levels, andchildhood acute lymphoblastic leukaemia (ALL). Itis also known that leukaemic children have higherlevels of blood iron and this sometimes persistsafter treatment.

Dr Dorak suggests that genetic variation passed onby the mother can increase iron levels in thedeveloping foetus, increasing the risk of childhoodALL. At least one in 10 people in the UK are carriersof the HFE mutation and it is important that weunderstand more about any association with ALL.

Dr Dorak will study the effects of this mutation oniron levels in the blood of healthy newborns andtheir mothers. He will look for associations betweenchildhood ALL and other genes related to ironregulation and, for comparison, he will examine therole played by other genes in iron regulation in thedevelopment of ALL in patients from Turkey wherethe HFE mutation is virtually non-existent.

Dr Richard Feltbower, University of Leeds."Does population mixing measureinfectious exposure at the communitylevel?"We awarded £69,052 to enable Dr Feltbower toexamine the validity of using population mixingmeasures as proxies for exposure to infection.

Several studies have identified associationsbetween population mixing and childhoodleukaemia, inferring that leukaemia may be directlycaused by exposure to infection. The ‘hygienehypothesis’ suggests that because today’s childrenare not exposed to the same level and range ofinfections as their counterparts of 50 years ago,their immune systems are not fully developed andthis may increase their risk of leukaemia.

Dr Feltbower will compare the validity of differentpopulation variables and quantify the strength oftheir association with infectious diseases. He willthen develop new census-based measures ofpopulation mixing and community characteristicsto more accurately reflect the load and diversity ofinfectious diseases.

If Dr Feltbower succeeds in developing reliablemeasures, these will be made available for use infuture epidemiological studies, enabling theinfluence of infections in childhood leukaemiadevelopment to be more precisely determined.

Dr Leeka Kheifets, University of California,Los Angeles. "Updated pooled analysis ofchildhood leukaemia and magneticfields"We provided £110,106 for Dr Kheifets’update of the previous pooled analyses ofstudies investigating the link betweenmagnetic fields and childhood leukaemia.

For various reasons, it is difficult toestablish the association betweenmagnetic fields and leukaemia in asingle study. Combining results in a‘pooled analysis' overcomes some of thedifficulties and the results of suchanalyses have shown that long-termexposure to high intensity magnetic fieldsis associated with a doubling of leukaemiarisk in children.

Dr Kheifets will update previousanalyses using six recently publishedstudies. By pooling the data she willbe able to measure the associationwith much greater precision. Shewill also be able to examine thedose-response relationship at highexposure levels, not possible insmaller studies due to therelatively few cases in the highexposure category, and explorewhether risk differs acrosssubgroups. This work willgive a greater insight into therelationship betweenmagnetic fields andleukaemia risk and willcontribute to thedevelopment of much-needed precautionarypolicies.

Professor Sam Milham,Washington DC. "Studies of the

relationship between environmentalEMF exposure and childhood

leukaemia"Professor Milham was granted £16,555for further studies of the relationshipbetween electricity and childhoodleukaemia.

In Great Britain a new peak inchildhood leukaemia mortality betweenthe ages of two and four yearsemerged in the 1920s and leukaemiamortality increased almost 5% per yearin children under 10 years of age in the50 years starting in 1911. A similarpattern was apparent in the UnitedStates and other countries and it hasbeen shown that the United Statespeak emerged and spread with astriking correlation to residentialelectrification.

Professor Milham, who led the USstudy looking at the spread ofelectrification, will be carrying outa series of further studies toexplore the relationship betweenelectricity and childhoodleukaemia. In the main part ofhis study he will attempt toreplicate his US finding bytracking the spread of thechildhood peak of leukaemiawith the spread ofelectrification in the provinceof Manitoba, Canada, wherethe date of electrification ofall 523 cities and towns isknown.

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Dr Tevfik Dorak, shown here with ResearchAssociate Rachel MacKay, is based in the new PaulO'Gorman Building at the University of Newcastleupon Tyne. The fantastic facilities in this newresearch centre (see page 19) will help them makebest progress in their research.



Dr Ketan J Patel, MRC Laboratory ofMolecular Biology, Cambridge. "Identificationand characterisation of novel genes thatfunction in the Fanconi anaemia tumoursuppressor pathway"Dr Patel was awarded £111,000 to study thegenetic pathway of Fanconi Anaemia (FA), a geneticcondition which leads to an enormous propensityto develop leukaemia.

Most cases of childhood leukaemia result fromsome kind of chromosome abnormality leading toloss or dysregulation of genes. All of our cellspossess proteins that prevent or repair suchdamage to our genetic information but sometimesthese do not work effectively.

A group of proteins have been identified which areessential to carry out this genetic repair. Loss ofany one of the ten proteins in the group leads to FA.These ten proteins do not seem to work in isolationbut rather constitute parts of a pathway. AlthoughFA is very rare, the genetics of the conditionprovide a unique opportunity to explore thepathways by which leukaemia develops.

Using our funding, Dr Patel will identify and studynew components of the FA pathway, with the aim ofestablishing a complete molecular understandingof how it works to protect our cells from leukaemia-causing genetic alterations. Identifying the functionof Fanconi genes will give an important insight intowhat prevents all of our cells from accruing thegenetic changes that lead to leukaemia.

Professor Nicholas Priest, MiddlesexUniversity. "Environmental radioactivity as acause of leukaemia in a high radiation areawithin central Asia: feasibility study"Professor Priest was awarded £15,000 to assessthe feasibility of a full-scale investigation into theassociation between environmental radioactivityand childhood leukaemia.

Acute exposure to high dose radiation is a knowncause of childhood leukaemia. It is thought thatprotracted exposure to low dose environmentalradiation could also be a cause of childhoodleukaemia but methodological problems havecaused contradictory results in the studies whichhave so far been undertaken.

The main problems encountered in such studies arethe low resolving power – a consequence of therelative rarity of the disease – and the low variationin radiation dose between cases and controls. Radiation exposures in the ‘uranium provinces’ ofsouth-eastern Kazakhstan and Kyrgyzstan appearto be both more variable and much higher than inthe UK and most other western nations and, assuch, these areas may be suitable locations for aninvestigation into childhood leukaemia. ProfessorPriest has designed a pilot study to confirm thevariability in radiation exposures and to assess thereliability of childhood cancer diagnoses in theregion.

This study will help Professor Priest to shape a full-scale investigation into the association betweenenvironmental radiation and childhood leukaemiaso that it has the best chance of delivering validand reliable results. If a positive association isfound, it should be possible to take steps to protectchildren living in areas of high natural backgroundradiation.

Professor Russel Reiter, University of Texas."Light-at-night, melatonin and experimentalleukaemia progression"Professor Reiter was awarded £72,436 for a studyinvestigating the role of exposure to light-at-night inthe development of leukaemia.

Melatonin is a hormone which is produced naturallyby our bodies during the hours of darkness and hasbeen shown to have anti-carcinogenic properties.Exposure to light during the hours of darknessinterrupts production of melatonin and there isevidence that this may increase our risk of cancer.The increasing use of artificial light-at-night may becontributing to the rising incidence of childhoodleukaemia (as well as other cancers).

Although there is already a growing body ofevidence concerning the damaging effects of light-at-night, there is little experimental data. ProfessorReiter, the world’s leading authority on melatonin,will directly test whether exposure to light-at-nightinfluences the growth of leukaemia cells in rats.This work will take forward our understanding ofthe damaging effects of exposure to light-at-nightand the beneficial effects of melatonin.

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Professor Eric Wright, University of Dundee."Investigations of microenvironmentally-mediated damage as a promotional factor inchildhood leukaemia"Professor Wright was awarded £138,493 to furtherhis investigations into whether some people mayhave genetic susceptibility to radiation damage,making them more vulnerable to its effects.

Exposure to ionising radiation increases the risk ofleukaemia in both children and adults and it isgenerally assumed that the disease develops asa direct result of DNA damage at the time ofexposure. However we know that thechromosome abnormalities linked with thedevelopment of leukaemia can be present atbirth and that only a small proportion ofchildren born with these abnormalitiesactually go on to develop leukaemia.

A number of recent research findingshave challenged conventional beliefsabout the effects of radiation. Takinginto account these findings,Professor Wright hypothesisesthat – since radiationexposures could not producesuch specific translocationsin such large numbers ofindividuals – exposure toradiation is notresponsible for initiatingleukaemia, but rather forpromoting the diseasedevelopment at a laterstage. Specifically heproposes that theradiation-induced tissueinjury is genetically determinedand that the chromosomeabnormalities which have been linkedwith leukaemia may affect the body’sability to cope with radiation damage.

Professor Wright, who has spear-headed many ofthe advances in our understanding of the effectsassociated with exposure to ionising radiation, willanalyse tissue samples from irradiated mice atdifferent time points to examine the immediate anddelayed effects of radiation.


Our plans for 2006:• In February 2006 we launched a further grantsround to encourage the development of highquality projects investigating the causes ofchildhood leukaemia. Professor Victor Hoffbrand ischairing the scientific panel for this new grantsround, the focus of which is biological mechanismsrather than epidemiology. We expect to announcethe awards in November.

• At the time of writing we have already made anagreement in principle to fund a programme ofwork by the world-renowned Childhood CancerResearch Group (CCRG) at the University ofOxford. The CCRG holds the largest and bestnational, population-based childhood cancerregistry in the world. It encompasses childhoodcancer registrations across the whole of the UKand is considered virtually complete from 1962 tothe early years of the 21st century. As a major partof the programme funded by CHILDREN withLEUKAEMIA the team there will be carrying outfurther investigatons to clarify some of the findings

of the Draper Report, their study into theassocation between proximity to power lines andchildhood leukaemia risk which was published in2005 (see page 22).

• As our knowledge about the causes of childhoodleukaemia improves, and the gaps in knowledgebecome more apparent, we will be looking into thefeasibility of developing a pro-active, targetedfunding programme, through which we may seekto commission research into areas of particularinterest.

• We will continue to work to improve ourmonitoring procedures for all funded projects andprogrammes including those listed on thepreceding pages and our ongoing programme offunding at the University of Bristol (Professor DenisHenshaw) and will work with all funded scientiststo ensure maximum disseminationof research findings(see also Objective 4).

Registered Charity No. 298405. Inaugurated in 1988 by Diana, Princess of Wales in memory of Jean and Paul O’GormanCHILDREN with LEUKAEMIA16

Dr Joseph Wiemels, University of California,San Francisco. "Aetiology of t(1;19) E2A-PBX1+ leukaemia: an integrative researchproject"Dr Wiemels was awarded £161,110 to investigatethe genetic events which lead to a particularchromosome abnormality associated with a form ofchildhood leukaemia.

One of the problems hampering our understandingof the aetiology of childhood leukaemia is that it isoften treated as one disease when, in reality, it is acollection of diseases that may have differentcauses. These different diseases are characterisedby genetic abnormalities evident at diagnosis.

Dr Wiemels is focusing on a common geneticmutation in childhood leukaemia, a translocationbetween chromosomes 1 and 19. He hypothesisesthat this translocation is induced by a combinationof enzymes produced by the cells and externalfactors that may be infectious or environmental inorigin.

Dr Wiemels will perform molecular analyses of thegenes, enzymes and DNA structures involved in thechromosome translocation to uncover theunderlying mechanisms. And he will collaboratewith colleagues on the Northern CaliforniaChildhood Leukemia Study to identifyepidemiological factors which are common amongleukaemic children with the t(1;19) translocation.

By breaking down the disease sub-groups in thisway Dr Wiemels may be able to produce moredefinitive answers about the environmental factorsthat play a role in the development of childhoodleukaemia as well as advancing our understandingof the mechanisms involved in the development ofthe disease.



Objective 3. We will provide capital funding to encourage the development of centres of excellence in childhoodleukaemia research.

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As a new charity back in 1988, our first goal was to raise £2 million for a newresearch centre at London’s Great Ormond Street Hospital. It took seven yearsfor us to achieve this goal, but the Paul O’Gorman Childhood LeukaemiaResearch Centre there now houses one of the UK’s leading research teams inthe field.

Since then we have also contributed funding to assist the development of otherchildhood leukaemia research centres around the UK. There are now PaulO’Gorman Childhood Leukaemia Research Centres in Bristol, London,Manchester and Newcastle. Two further centres will soon be opening – at theInstitute of Cancer Sciences, University College London (UCL) and the new PaulO’Gorman Leukaemia Research Centre at the University of Glasgow.


• In 2005 we made a payment of £1 million to UCL towards the costs of buildingand equipping the Paul O’Gorman Building housing the new Institute of CancerSciences, due to open in autumn 2006, taking our total contribution to £1.5million. The Institute will co-ordinate all of UCL’s cancer research, providing afocus for excellent basic science and translational studies across the College’sdifferent sites. The Institute will ultimately house over 200 scientists.

• On a smaller scale we were pleased to be able to respond positively to arequest from the Cancer Immunogenetics Laboratory at the University ofManchester to fund a DNA sequencer to facilitate their research into the causesof childhood leukaemia. The grant of £64,591 was made in memory of LordCarlisle of Bucklow, a trustee of CHILDREN with LEUKAEMIA who died in 2005.The grant was partly funded by the many generous donations made by LordCarlisle’s friends and family and a legacy which Lord Carlisle had generouslyincluded in his will.

Our plans for 2006:

In March 2006 we made a payment of £200,000 to complete our £500,000pledge to the University of Glasgow for the new Paul O’Gorman LeukaemiaResearch Centre there. This new Centre will bring together Glasgow’s existingleukaemia expertise, which is currently scattered around a number of differentsites making collaboration more difficult than it might otherwise be. The newCentre will provide a much-needed translational research facility that will giveboth clinicians and researchers access to the most advanced facilities andequipment.

We also plan to complete our commitment to UCL in 2006 by raising a further£500,000 towards the Institute of Cancer Sciences.

In recent years, our focus has shifted slightly away from the development ofresearch facilities so that we have more funding available to support researchprojects and programmes. As such, we are unlikely to take on further majorcommitments for building projects.

At the time of writing we have begun a programme of visits to monitor the work beingcarried out in the existing Centres and encourage collaboration between them.

The Paul O'Gorman Building, housing theNorthern Institute of Cancer Research at theUniversity of Newcastle upon Tyne, wasofficially opened by Sir Bobby Robson inFebruary 2005. Childhood leukaemia is one offour major research themes at the Institutewhere more than 100 scientists benefit fromthe facilities available in the new Building.


Objective 4. We will take forward the results of relevant research so that the knowledge gained can be used to best effect.

As well as directly funding research into both thecauses of and treatment for childhood leukaemiawe have a key role in disseminating the results ofthis research so that information is shared byresearchers around the world, enabling bestprogress to be made. Although two of the threeconferences described below are taking place in2006, the funding was granted in 2005, hence theirinclusion in this section.


• European Radiation Research (ERR)Meeting, Leicester. We made a grant of £6,739to enable the organisers of this important meetingto invite keynote speakers for relevant sessions(including those on non-ionising radiation, genomicinstability, radiation carcinogenesis, DNA damageand stem cells). Two hundred scientists fromacross Europe as well as America, China, Japanand India attended the meeting in September2005, during which more than 100 oralpresentations were made. Meetings like this arecritical in ensuring that current research findingsare disseminated and discussed and in fosteringcommunication and collaboration between thoseworking in the field to ensure that optimal progressis made.

• The Molecular Basis of ChildhoodLeukaemia, Institute of Child Health, London.We awarded £10,000 to the Institute of ChildHealth to support their 2006 Haematology-Oncology Symposium. As for the ERR meetingabove, our funding was given to enable theorganisers to invite keynote speakers. Many of theleading experts in this field are from the US,meaning that the travel and accommodation costsare high.

• International workshop on non-targetedand non-linear effects of ionising radiation,Edinburgh. The aim of this three day workshop,organised by Professor Eric Wright of theUniversity of Dundee, is to provide a forum todiscuss the wider relevance of some recent

developments in radiation biology which areconcerned with effects that are not readilyexplained in terms of the current paradigm ofradiation action. Professor Wright aims to bringtogether some of the people who have identifiedthese phenomena with those who have insightfrom other areas of biomedical research. We havemade a grant of £29,000 to help support the costsof this ground-breaking event which will help us tobetter understand the role of ionising radiation inleukaemia development. The workshop will takeplace in August 2006.

• Also in line with this objective in 2005 wecommissioned a review of the scientific evidencerelating to electric and magnetic fields and theirrole in the causation of childhood leukaemia. Theresulting document ‘Do electric and magneticfields cause childhood leukaemia? A review of thescientific evidence’ will be used to inform theongoing debate about precaution.

• We were delighted that work funded byCHILDREN with LEUKAEMIA at the University ofBristol has resulted in the introduction of apractical measure which may help to save the livesof children with leukaemia. Disposable plasticaprons have been used by nurses for a number ofyears now since their cotton uniforms wereimplicated in the spread of bacteria. Howeverplastic acquires a static electric charge which canattract bacteria from the surrounding air. Dr JanetAllen tested a number of different types of apron,made either from ordinary or anti-static plastic tosee whether anti-static plastic is a more effectivebarrier. One anti-static apron from five types testedresulted in a 38% reduction in bacteria attractedonto its surface compared with the standardaprons currently used. The use of the anti-staticaprons - which have now been included in the NHScatalogue as a direct result of Dr Allen’s work -may help to reduce the spread of hospitalinfections, particularly in isolation wards such asthose in bone marrow transplant units whereimmuno-compromised patients are moresusceptible to infection.

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Our plans for 2006:

• We will develop plans for an annual CHILDRENwith LEUKAEMIA grant holders’ conference. Theaim of such a conference would be to bringtogether those working in the field of childhoodleukaemia to share research findings and latestknowledge and encourage collaboration betweenthe different groups we are funding.

• We will also look at other ways of ensuringwidespread dissemination of the findings ofresearch that we fund. This includes plans todevelop our website to include better informationabout funded projects.

• We will develop plans for a further conference onthe causes of childhood leukaemia – to take placein 2008.


Objective 5. We will raise public awareness about issues of concern and seek to influence the development of policy topromote the best interests of children with leukaemia or at risk of leukaemia.

One of our fundamental aims is to advanceknowledge of the causes of childhood leukaemiaand to understand the reasons for its increasingincidence. There are some areas of research wherethe outcomes may have practical implications forthe prevention of leukaemia. One such area is thenow established link between electricity andchildhood leukaemia. The association withexposure to electric and magnetic fields was firstsuggested by a 1979 study which reported adisproportionately high number of childhoodcancer deaths in families living close to electricitytransmission equipment.

Many other studies have investigated this linkbetween electricity and childhood leukaemia, withmixed results, but the largest and most recent study(the Draper Report, published in June 2005) reporteda significantly increased risk of leukaemia in childrenin England and Wales living within 600 metres of ahigh voltage overhead power line.

There is little protection against this risk forchildren in this country. Current guidelines set anexposure limit 250 times higher than the level atwhich a doubling of childhood leukaemia risk hasbeen found. In 2004 the Department of Health(DoH) established a stakeholder advisory group(known as SAGE) to consider the case for revisingthese guidelines downwards. SAGE is jointlyfunded by DoH, CHILDREN with LEUKAEMIA andNational Grid. Forty organisations (includingstatutory, voluntary and commercial) arerepresented on SAGE and are working towardsmaking recommendations to Government forpractical precautionary measures. It is a complexarea but, as a first step, we are pushing for animmediate moratorium on the building of newhomes and schools near to existing high voltagelines and on the construction of new lines near toexisting homes and schools.

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• In June 2005 we used the opportunity presented bythe publication of the Draper Report to raiseawareness of the dangers of electric and magneticfields (EMF), with resulting coverage on all fourbreakfast news shows plus many of the broadsheetsand tabloids. We were pleased that the mediacovered the issue responsibly, raising public concernwithout causing alarm.

• We carried out a range of activities to raiseawareness of the issue amongst politicians and pavethe way for effective implementation of therecommendations of SAGE. Through our contactswith MPs we ran a programme of parliamentaryquestions during the year. We received very helpfulresponses from Caroline Flint, the ParliamentaryUndersecretary of State for Public Health and YvetteCooper, Minister of State for Housing and Planning.In addition, Dr Howard Stoate MP tabled an EarlyDay Motion (EDM) on our behalf. The EDM called forGovernment to take immediate action to protectchildren from the damaging effects of high voltageoverhead power lines and supported our call for amoratorium on the building of new schools andhomes in proximity of these lines. We had 101signatures from back bench MPs by year end. Thishas since increased to 170.

• We commissioned law firm Bircham Dyson Bellto look at the legal aspects of EMFexposure and determine the extent towhich the potential effects of EMF onhuman health is a matter recognised bylaw in the determination of planning andother development consents, with aparticular focus on power lines andelectricity sub-stations. The resultingreport ‘Electric and magnetic fields andpublic health: legal requirements,responsibilities and shortcomings’ has beenused to inform our campaign for improvedprotection from EMF exposure.

• We commissioned Opinion Leader Researchto establish the public’s perspectiveconcerning the power line/childhoodleukaemia issue and their views on whatconstitutes appropriate precautionary action.Although most participants were initiallyunaware of the association between power lines

and childhood leukaemia, once informed of thecurrent evidence, most felt that something neededto be done to address the issue. Burying the powerlines was the preferred option amongstparticipants. The expense of this was recognisedand participants accepted that, as consumers, atleast a proportion of the cost would be shoulderedby them. There was also a strong feeling amongstparticipants that they should have more opportunityto have a say on where new power lines are sited.

• In December we held a one-day meeting inLondon for members of SAGE to learn about theexperiences of countries which have alreadyintroduced precautionary measures to protectagainst the potentially damaging effects of EMF. Weheard from speakers from Australia, theNetherlands, Sweden and Switzerland, just four ofthe countries which have already introducedprecautionary measures. This highly targeted eventwas well attended with representatives fromorganisations such as the Department of Health,the Health Protection Agency, Office of the DeputyPrime Minister, Ofgem, National Grid and a range ofacademic institutions, professionalbodies and interestgroups.

Our plans for 2006:

• In January 2006 we extended the qualitativepublic opinion research carried out for us byOpinion Leader Research by commissioning TaylorNelson Sofres to carry out a larger scale publicopinion poll. We were surprised at the level ofconcern expressed by the 965 people surveyed byTNS. Sixty per cent of respondents expressedconcern about the link between childhoodleukaemia and EMF and half of these people wereso concerned that they said they would beprepared to pay extra on their electricity bills tohelp fund measures to reduce exposure. Thisinformation will now be used to support our call forprecautionary measures.

• Dr Howard Stoate MP, with the support ofCHILDREN with LEUKAEMIA, has established across-party Parliamentary Commission to examinethe scientific evidence on the links between EMFand childhood leukaemia, review planningguidelines on the proximity of housing to powerlines and consider the public’s views on the

appropriateness of the Government takingprecautionary action to reduce exposure to EMF.The first meeting was held in May and a series offurther meetings will take place over the summer.Joining Dr Stoate on the Commission are Dr IanGibson MP, Michael Connarty MP, Sandra GidleyMP and Nick Hurd MP.

• We will maintain our involvement with SAGE torepresent the interests of children potentiallyaffected by exposure to EMF. The report on powerlines is due to be published this year and we willwork to ensure that the scientific evidence andassociated public opinion on this issue are fullyreflected in the final version.

• Whilst the debate continues about theappropriate level of precaution to be adopted, wecontinue to fund research to help us understandthe link between electricity and leukaemia.

• We will continue to represent the interests ofchildren with leukaemia and children at risk of

leukaemia by providing a voice on otherrelevant issues. Issues

currently on the agendainclude: the regulation ofdonor lymphocyte infusion(a curative treatment forchronic myeloid leukaemia)to ensure that it is allowed tocontinue under the newEuropean Union BloodDirective; the future of theHealth Protection Agency’sRadiation ResearchProgramme (the onlyGovernment fundingprogramme covering thecauses of childhood leukaemia),which was frozen in 2005; andthe future of funding forspecialist tertiary treatmentcentres which are currentlysuffering from a funding shortfallas a result of new Department ofHealth fundingarrangements.

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Objective 5. We will raise public awareness about issues of concern and seek to influence the development of policy topromote the best interests of children with leukaemia or at risk of leukaemia.

CHILDREN with LEUKAEMIA


Objective 6. We will support welfare initiatives to minimise the difficulties and disruptions caused by treatment.

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A diagnosis of leukaemia is a devastating blowwhich sends families reeling. The child willimmediately be referred to their regional treatmentcentre, often many miles from home, for furthertests. Treatment will begin straight away.

This involves great upheaval for the whole family,with the child and a parent often absent for longperiods especially during the initial stage ofintensive treatment.

We always allocate a significant proportion of ourfunds to welfare projects designed to help childrenand families cope with the trauma of leukaemiadiagnosis and treatment. Our first such welfareproject was our respite facility, the Paul O’GormanRespite and Recuperation Centre, in West Sussex– a place for the family to relax and spend timetogether during their breaks in treatment. We havealso provided funding to help improve the facilitiesat various hospitals such as the Christie Hospital inManchester where we helped the team to developspecialised facilities for their teenage cancerpatients.


• We reached our target of £2 million for the newPatient Hotel at Great Ormond Street Hospital. Theteam at Great Ormond Street treat children from allover the UK, seeing one in every 10 children withcancer. Children and parents face a long returnjourney to London and back for their regularoutpatient treatment and often the distancesinvolved prove too much and children end upbeing readmitted unnecessarily, causing upheavalfor them and taking up valuable in-patient beds.The Paul O’Gorman Patient Hotel supports theHospital’s day care facilities by providingsomewhere for parents and children to stay beforeand after treatment. It means that they can travelto London the afternoon before treatment andtravel home the day afterwards, safe in theknowledge that they have somewhere comfortableand convenient to stay. It also helps to ensure thatinpatient beds are available for those who reallyneed them.

• We continued our partnership with the PaulO’Gorman Lifeline Charity (or Lifeline), apartnership which began in 1996 when wecontributed to the cost of bone marrow transplantsat Hammersmith Hospital for two teenageleukaemia sufferers from St Petersburg. Over theyears, Lifeline’s work has widened to includechildren from other countries where children do nothave access to life-saving leukaemia treatment,including Georgia, Kyrgyzstan and Ukraine.

In 2005 we provided funding of £755,267 toLifeline. The medical costs for a single child maybe as much as £85,000. The costs of travel andaccommodation can push this up to well over£90,000. Lifeline works with a variety of otherorganisations which help support these costs.They receive substantial support for Georgianpatients from a local charity which pays for travel,subsistence and some medical expenses. In Italy,where many of the patients are now treated,regional government authorities provided grant aidfor 16 patients in 2005, representing about C1.6million.

The children that Lifeline helps really represent thetip of the iceberg. As the work of Lifeline becomesbetter known, the demands on their resourcescontinue to grow. In 2005 the charity received 95new referrals, in addition to the 34 patients stillunder treatment from the previous year. They havenever yet had to turn a child away on the groundsof cost but as the number of referrals continues togrow, it makes Lifeline’s primary aim – to improvethe medical facilities in the countries where theywork – more and more important. They are makingconsiderable progress but it is a slow andexpensive process.

• We made our annual grant of £60,000 to TheVariety Club of Great Britain to fund two nurses – inCornwall and Tyne & Wear – to provide supportand care for children in the community.

• We were pleased to provide a further grant of£50,000 to CHASE Hospice Care in Guildford tohelp them continue to provide services for thefamilies of children whose leukaemia treatment hasfailed. They offer care and support in the familyhome and at St Christopher’s, their hospice inGuildford.

• And we made a grant of £20,000 to the SussexSnowdrop Trust to support the costs of providingnursing care and other support to children withleukaemia and their families.

• On a lighter note, every year we organise themost enormous party for children suffering fromleukaemia. Some bring brothers and sisters. And tomake sure it really is an enormous party, we invitethousands of other disadvantaged children as well.The 18th Amazing Great Children’s Party, held inBattersea Park in July, proved to be a fantastic dayout for thousands of smiling children. We aregrateful for the generosity of all the companies andindividuals who donate their time, talents andproducts, without which this party for so manydeserving children would not take place.

Our plans for 2006:

• In 2006 we are continuing our partnership withGreat Ormond Street Hospital by raising funds tosupport a much needed expansion of their cancerwards to help them cope with the increasingnumber of patients that they are treating. We havepledged to raise £1.7 million towards the cost of thisexpansion and made our first payment of £500,000on 7th April 2006, marking what would have beenPaul O’Gorman’s 34th birthday. We expect toachieve our £1.7 million target within four years.

• We will also continue to work with the PaulO’Gorman Lifeline Charity to support their work incaring for children with leukaemia from the formerSoviet Union.

• We will review the use and operation of our respitefacility at Green Hedges in West Sussex and theprovision of parental accommodation facilities at theRoyal Free Hospital in north London to ensure thatthese continue to meet the needs of affectedchildren and families and that they continue torepresent best use of our funds.


Raising the funds to support our charitable activities

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All of the work described on the preceding pages is underpinned by ourfundraising - we receive amazing support from individuals and groups around theUK who go to incredible lengths to raise vital funds for our work. We are entirelyreliant on this voluntary support as we receive no government funding.

Just some of our achievements in2005:

Celebrity appealsAlmost 50 per cent of our income comes from ourpostal appeals which simply would not be possiblewithout the continued support of our many celebrityfriends. In 2005 our Summer and Christmas raffleappeals were fronted by Linda Robson and GaryLineker and our Spring and Children’s Party appealswere spear-headed by Dame Judi Dench andJeremy Beadle. This programme of appeals raised£4.3 million during the year. We are focusingincreasingly on encouraging people to commit toregular gifts and our success is reflected in the factthat our committed giving income (standing ordersand payroll giving) increased by 25 per cent in 2005and now contributes in excess of £0.5 million perannum.

We were delighted to be chosen to benefit fromRun for the Children, a national family fitnessprogramme launched in 2005 which encourageschildren and parents to start making healthylifestyle choices. As a part of this, families take partin a 3 km run in a local park and are asked to raisesponsorship for CHILDREN with LEUKAEMIA.

Children’s fundraisingChildren’s fundraising is an important part of our programme. Not onlydoes it raise significant funds to support our work but it helps to educatechildren about leukaemia. Our first children’s fundraiser, the Children’s

Marathon Challenge, was launched in 2002. Since then, over 400,000children have raised an astonishing £6 million for their schools, guide units,

scout sections, clubs, groups and CHILDREN with LEUKAEMIA.

In April 2005, in response to requests from teachers and group leaders forsomething suitable for older children, we piloted a new challenge - theCheeky Monkey’s Marathon Challenge. Just like the

Children’s Marathon Challenge, children can do anyactivity based on the number 26. Almost 13,000 children took part in this newactivity in 2005, raising funds of £236,000, £146,000 of which was remitted toCHILDREN with LEUKAEMIA (they are allowed to keep half the money raised fortheir school/group). By the end of the project (31st March 2006), 20,175 childrenhad taken part, with the total funds raised standing at £370,000 (with £227,000remitted to CHILDREN with LEUKAEMIA). We are grateful to Carlton Cards forallowing us to use the fantastic Bubblegum characters which make this Challengeso distinctive.

Soak those spongesreally wet

Hurl them through thebasketball net

Running eventsThe Flora London Marathon was our single most important

fundraiser in 2005. Once again we fielded a team of over 1,100runners who between them raised a staggering £1.9 million, a record

for us and indeed a record for the event. Distinctive in their Mr Menand Little Miss vests, our runners always create a major presence for

CHILDREN with LEUKAEMIA on race day. We are grateful to Chorion plcwho have made CHILDREN with LEUKAEMIA the official charity of the Mr

Men and Little Miss characters, enabling us to continue to use thesewonderful images free of charge for both our running events and the

Children’s Marathon Challenge.

We continued to build our participation in other running events and in 2005 wefielded our largest ever team in the Great North Run. 806 runners endured

unseasonably hot weather to complete the 13.1 miles from Newcastle to SouthShields as part of our Mr Men and Little Miss team.


Special thanks go to...

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CHILDREN with LEUKAEMIA is grateful to the very manyindividuals and organisations who donate vast amountsof time and effort either directly in support of ourcharitable objectives or by raising vital funds to enableus to progress our objectives.

• As usual, the largest area of volunteer assistance in2005 was the Amazing Great Children’s Party in Julywhen more than 1,000 volunteers helped us to ensurethat the children had a day to remember. We areespecially grateful to Hugo Amaya-Torres for continuingas Chairman of the Party committee.

• All of our scientific advisors and members of ourgrants panels give their time voluntarily. We are gratefulto our 2004/5 grants panel, made up of: Professor DenisHenshaw (Chair), Professor Michel Coleman, Dr ThomasErren, Professor Dudley Goodhead, Professor VictorHoffbrand and Professor Nicholas Priest. ProfessorVictor Hoffbrand has undertaken to Chair the 2006grants panel.

• The charity benefits from volunteer assistance in theoffice, estimated at 0.4 full-time equivalent staff duringthe year and we are grateful to those who support ourstaff team in this way.

• We are fortunate to have many celebrity friends whosupport our work in various ways. Special thanks go toJeremy Beadle who devotes an enormous amount oftime to the charity. As well as hosting his annual QuizParty and acting as compére at the Paul O’GormanBanquet & Ball, on Christmas Eve he took part onCelebrity Who Wants to be a Millionaire? with Sir AlanSugar and raised £16,000 for CHILDREN withLEUKAEMIA and Great Ormond Street Hospital. We arealso indebted to Linda Robson who gives us asubstantial amount of her time. Linda became a trusteein 2005.

• Voluntary committees contribute a huge amount oftime to ensure the success of our special events such asthe Opera at Syon, the Captains’ Cup and JeremyBeadle’s Quiz Party. These events raised almost£500,000 in 2005. We are particularly grateful toMargrete Hargreaves Allen and Julia Craig Harvey forcontinuing to co-chair the Opera committee; to Nick Hillfor chairing the 2005 Quiz committee and to HollyBellingham for taking over as Quiz chair in 2006.

• In 1993, rather than continue to give to charity on anad hoc basis, ICAP decided to do something on a largerand more innovative scale. So Charity Day was born, aday on which both the company’s revenues and thebrokers’ commissions are all given away to just a fewcharities. The idea has proved hugely successful and weare very grateful to ICAP customers and staff whoseenthusiastic and generous support made possible theirfabulous donation of £150,000 in 2005.

• Our great friend Caroline Randerson raised over£60,000 for us at her annual ball in 2005. In the 18 yearsthat Caroline has been raising money for us she hasdonated more than £400,000.

• In 2005 CHILDREN with LEUKAEMIA benefited fromClub Triumph’s 2,000 mile, 48-hour run from Enfield toJohn O’Groats to Lands End and back to Enfield. Thetenacity and tremendous fundraising efforts shown bythe 200 navigators raised almost £54,000.

• Our thanks go to Vince O’Brien, Chairman of the BVCA,who nominated CHILDREN with LEUKAEMIA to receivethe £13,000 proceeds from the Real Deals Private EquityAwards Dinner in April 2005 and a further £28,000 fromthe sports and movies memorabilia auction at the annualBVCA dinner in November.

• We are delighted that RBS Insurance Services – whotook over Churchill Insurance in 2004 – has chosen tocontinue Churchill’s longstanding support of CHILDRENwith LEUKAEMIA, making us one of their two corporatecharities. In 2005 their staff raised almost £20,000towards our vital work and, with a number of excitingactivities planned for the year ahead, they look set toraise at least twice this amount in 2006.

• Clare Fogarty organised the Friends of Notre DameWinter Ball which raised £15,000 for our work. Clare’sson, Emmett, who is currently undergoing treatment forleukaemia, provided us with a drawing which has beensent as a ‘thank you’ to many of our supporters in 2006.

• Huge thanks go to Debbie and Wendy Westwood whocontinue to raise money for CHILDREN with LEUKAEMIAthrough the Hollie O’Brien Leukaemia Research Appeal,which they set up in memory of Debbie’s daughter andWendy’s granddaughter, Hollie, who tragically died fromleukaemia at the age of four years. Throughout 2005 theirvarious fundraising activities raised a staggering £13,000.

• Thanks also to Anne Ferguson who organises anannual St Trinians Sponsored Walk in aid of CHILDRENwith LEUKAEMIA. Dressed in gym skirts, fishnetstockings and ponytails, Anne and more than 70‘classmates’ raised a fantastic £12,000 for us in 2005.

• For the second consecutive year, members andexecutives of Associazone Parmigiani Valtaro have mostkindly chosen to support CHILDREN with LEUKAEMIA attheir 2005 Charity Gala Ball. Our special thanks go toPiero Zanelli for all his hard work organising the event,which raised £10,000.

There are many, many others who have given invaluablesupport in 2005. Space does not allow an exhaustive listbut to each and every person who has contributed to ourwork in 2005 we extend an enormous thank you.

Raising the funds to support our charitable activities

And some of our plans for 2006:• We will continue to build on the success of ourrunning events – to encourage more people to run onour behalf and to raise the maximum amount ofsponsorship in doing so. We have been made theofficial UK charity of the 2006 ING New York CityMarathon and Half Marathon which will help us toincrease our profile at these major events and to boostthe income generated from them. At the time of writing,the Flora London Marathon has already taken place andonce again our Mr Men and Little Miss Team boastedmore than 1,100 runners. In addition to the funds raisedby our fantastic team of runners, CHILDREN withLEUKAEMIA is also one of the charities set to benefitfrom the efforts of Sir Steve Redgrave who set out toraise the highest ever amount achieved by an individualfundraiser in this event. He has already smashed theexisting record by more than £0.5 million, raising £1.8million.

Sir Steve was assisted in his endeavour by Lloyd Scottwho took part in this year’s Marathon – which tookplace on St George’s Day - wearing a full suit of armourand dragging a 200lb dragon. Lloyd completed theroute in a mere eight days.

• We will continue to encourage our donors to commit

to making regular donations as this gives us a secureincome stream, helping us to plan our charitable workwith greater confidence. In March Sir Steve Redgraveheaded up our first ever direct debit appeal. At the timeof writing, this has already resulted in over 300 newdirect debits and more than £400,000 in cash donations.In April we began our first ever telephone fundraisingcampaign: telephoning new donors recruited from theGary Lineker’s Christmas raffle appeal to ask them toconsider giving to us regularly by direct debit. Staff andtrustees will be monitoring this carefully – not only tomeasure financial efficiency but also to keep an eye onany donor dissatisfaction.

• Following the successful piloting of the CheekyMonkey’s Marathon Challenge we will be rolling out thescheme nationally in 2006.

• We will be taking steps to develop new partnershipswith both companies and trusts in 2006. We alreadyhave a small number of valuable corporate and trustpartnerships, but the income from these sources makesup only a small proportion of our total income. This hasbeen identified as an important area of potentialdevelopment and we have already stepped up ouractivity in this area.


Structure, governance and management

Governing documents

The dormant holding charity, the Foundation for Childrenwith Leukaemia operates under its Trust Deed (dated 4thJanuary 1988) and Variation of Trust Deed (dated 10thDecember 2003). The operating company, Children withLeukaemia, operates under its Memorandum and Articlesof Association dated 11th November 2003 as amended byspecial resolution, dated 30th November 2004.

Board of Trustees

The governing body of the operating company is the Boardof Trustees, which has been built up during 2005 to acurrent total of seven members. It meets at least threetimes a year together with the Chief Executive.

Trustee appointment and induction

A number of new trustees were appointed in 2005. Thepolicy with respect to the size and make-up of the TrusteeBoard is to keep the size of the Board small whilst ensuringthat the founding family remains in a minority. Selection oftrustees is made based on vacancies arising, sympathywith the objects of the Charity and the additional skills andexperience that potential new trustees are able to afford –for example one of the new trustees is a specialist inscientific research and one in voluntary sectorcommunication. Under the Articles of Association,trustees are appointed by a majority vote of the members(who are all the current trustees) by ordinary resolution.

Each new trustee receives the Charity Commissionpublication ‘The Essential Trustee: What you need to know’as well as the most recent published annual report. TheChief Executive offers an induction day to all trusteeswhich provides full information about the operations of theCharity.

Management

The Trustees exercise executive responsibility for thegovernance of the Charity and through the Chairmansupervise the management of the Charity by the ChiefExecutive and the staff team. The Chairman and ChiefExecutive also task the Board with decision-making onsome strategic management issues as appropriate.

The staff are expected to call upon the expertise of a panelof scientific advisers before making recommendations toTrustees.

It is the Trustees’ policy to work with other relevantcharities and during the course of 2005, the Charity workedclosely with the Leukaemia Research Fund, the GreatOrmond Street Hospital Children’s Charity, Paul O’GormanLifeline and the Venik Trust.

Risk and internal control

The Trustees have overall responsibility for ensuring thatthe Charity has an appropriate system of controls, financialand otherwise. They are also responsible for safeguardingthe assets of the Charity and hence for taking reasonablesteps for the prevention and detection of fraud and otherirregularities and to provide reassurance that:

- its assets are safeguarded against unauthorised use ordisposition;

- proper records are maintained and financial informationused within the Charity or for publication is reliable; and

- the Charity complies with relevant laws and regulations.

As part of the Charity’s risk management process theTrustees acknowledge their responsibility for the Charity’ssystem of internal control and reviewing its effectiveness.It is also recognised by the Trustees that such a system isdesigned to manage rather than eliminate the risk of failureto achieve the Charity’s objectives and can only providereasonable, not absolute, reassurance against materialmisstatement or loss.

The Trustees keep under regular review the major risksthat could affect their achievement of the Charity’sobjectives. It is the Trustees’ policy that a substantiveannual risk assessment takes place and that whereverpossible, different experts examine the issues each year. Itis anticipated that this will usually entail the use of one firmfrom the Charity’s roster of professional advisers whetherlegal or accountancy and that the fresh perspectivesbrought each year will add considerable value in identifyingpotential exposure not previously apparent to the staff andtrustees.

In 2004, a risk review was carried out by the Charity’sinternal auditors, Sayer Vincent. Risk managementstrategies were implemented during 2005 to controlagainst these identified risks. During 2005, the Charity’snew auditors, Deloitte prepared a risk managementdocument. Following this guidance from Deloitte, in 2006it is intended to compile an ongoing risk register to identifypotential risks which could have a critical impact to enablefurther risk management to be introduced.

Reserves

The Trustees have adopted a reserves policy which theyconsider appropriate to ensure the continued ability of theCharity to meet its objectives. The Trustees have recentlyreviewed their reserves policy. Their aim was to find abalance between maximising charitable work and the needfor preparation for contingencies. Consideration was givento assessing the risk, probability and likely impact on theCharity’s ability to meet its financial obligations and reduceexpenditure following any short-term decline in income.

The Charity has a very low ongoing cost base and a fixedasset base of zero. The Trustees feel it is sufficient tomaintain an unrestricted reserve of a minimum of twomonths and up to a maximum of four months of the annualtotal expenditure with an aim to be in the middle of therange. Free reserves at 31 December 2005 amounted to£2.1m (2004: £2.0m), which represents 11 weeks ofunrestricted resources expended during 2005 andtherefore meets the policy requirement.

Investments

The Memorandum of Association allows the Charity todeposit or invest funds in any manner but to invest onlyafter obtaining such advice from a financial expert as theTrustees consider necessary and having regard to thesuitability of investments and the need for diversification.

The Charity recognises that it must have enough resourcesto carry out its present and future activities effectively.Therefore the Trustees have agreed to hold sufficient cashlevels, invested only on short term deposit, to meetfluctuating needs. It is felt that this amount of cash shouldbe in line with the level of reserves.

Cash balances generally are increasing over time sincemore funds are being kept available to meet longer termgrant commitments. The Trustees are keen to ensure thatthese funds are not exposed to any risk since this cashvalue has already been promised to grant holders. Theywould like to maximise real returns so resources in excessof the level of reserves may be invested as cash for suchfixed terms as are deemed optimal from time to time inrelation to cash flow requirement and short and mediuminterest rates prevailing at the time.

Grant making policy

It is the Trustees’ policy to maximise the proportion of itscharitable output that is achieved through grant making.

• Welfare grantsOver recent years, the Charity has granted its welfareestablishments to other charities and under standingagreements has provision to fund the work of thesefacilities. New welfare facilities are now initiated onlythrough third parties under grant funding. There is no openapplication process for welfare grants and no welfaregrants are given to individuals. The staff of the Charityproactively work with the Trustees to determine whichorganisations should be supported.

• Research grantsAn increasing proportion of the Charity’s output isachieved through medical research. Capital funding forscientific institutions is now being decreased as aproportion of the Charity’s total output in favour of revenuefunding for scientific and medical research.

Project funding in these areas is directed in two ways:

1. Research into treatmentThe Charity works in partnership with the LeukaemiaResearch Fund, the Great Ormond Street Hospital Children’sCharity, University College London and other institutionsgiving grants in support of the parts of their programmeswhich are relevant to the Charity’s objects.

2. Research into prevention and causesIn 2005, the Charity was accepted as a member of theAMRC and advertises worldwide for project applicationswhich are then subject to peer review and assessment bythe Charity’s expert research grants committee before theTrustees determine which projects to support. It is also theTrustees’ policy to keep a number of directly fundedprogrammes of long-term research supported at UKinstitutions in areas which are of wide-ranging importance inrelation to childhood leukaemia.

Statement of Trustees’ responsibilities for thefinancial statements

UK company and charity law requires the Trustees toprepare financial statements for each financial year whichgive a true and fair view of the Charity’s incoming resourcesand application of resources during the year and of its stateof affairs at the end of the year. In preparing those financialstatements the Trustees are required to

• select suitable accounting policies and then apply themconsistently;

• make judgements and estimates that are reasonable andprudent;

• state whether applicable accounting standards andstatements of recommended practice have been followed,subject to any material departures disclosed and explainedin the financial statements; and

• prepare the financial statements on the going concernbasis unless it is inappropriate to presume that the Charitywill continue in operation.

The Trustees are responsible for keeping proper recordswhich disclose with reasonable accuracy the financialposition of the Charity and enable them to ensure that thefinancial statements comply with the Charities Act 1993.They are also responsible for safeguarding the Charity’sassets and hence taking reasonable steps for the preventionand detection of fraud and breaches of law and regulations.

Approved by the Board and signed on its behalf on 4th July2006 by

Eddie O’GormanChairman of Trustees

32

CHILDREN with LEUKAEMIA isthe registered working name ofthe Foundation for Children withLeukaemia (formerly the PaulO’Gorman Foundation forChildren with Leukaemia) whichwas constituted as a charityunder a Trust Deed dated 4January 1988, in memory of PaulO’Gorman who died on 6February 1987 and his sisterJean, who died on 3 November1987. The Charity wasinaugurated by Diana, Princessof Wales on 12 January 1988 atMill Hill County High Schoolwhere Paul had been a pupil.

On 1 January 2005, theFoundation for Children withLeukaemia transferred its assetsand operations to Children withLeukaemia, a company limitedby guarantee with Companynumber 4960054. The registeredcharity number for this newcompany remains the same asfor the Foundation.

Details of the Charity’s activitiesare available from the principaloffice of the Charity: 51 Great Ormond Street,London WC1N 3JQTel: 020 7404 0808Fax: 020 7404 3666Email: [email protected]

TrusteesTrustees of the operating charity,CHILDREN with LEUKAEMIA,who served during the yearwere:Eddie O’Gorman (Chairman)The Earl Cadogan DLThe Lord Carlisle of Bucklow,PC, QC, DL (died in office, 14 July 2005)Professor Denis Henshaw(appointed 21 June 2005)Sandra Mileham (appointed 21 June 2005)Baroness Morgan of Drefelin(appointed 5 November 2005)Marion O’GormanLinda Robson (appointed 21 June 2005)

Chief ExecutiveEdward Copisarow

Registered Charity Number298405

SolicitorsNabarro NathansonLacon House, Theobald’s Road,London WC1X 8RW

AuditorsDeloitte & Touche LLPHill House, 1 Little New Street,London EC4A 3TR

BankersNational Westminster Bank plc30 North Audley Street, LondonW1A 4UQ

SCIENTIFIC ADVISERSProf. A. V. Hoffbrand, DM, FRCP,

FRCPath, DSc (Chairman)Prof. M. Coleman, BM, BCh, MSc, MFPhmProf. N. E. Day, MA, PhD, MRCPathProf. J. Golding, MA, PhD, FSS, DScProf. J. M. Goldman, DM, FRCP, FRCPathProf. I. M. Hann, MD, FRCP, FRCPath, FRCPCH, FRCPI

FRCPCH, DRCOGProf. I. A. G. Roberts, MD, FRCP, FRCPath,

FRCPCH, DRCOG

AMAZING GREAT CHILDREN’S PARTYHugo Amaya-Torres (Chairman)

CELEBRITY FRIENDSJeremy Beadle (Chairman)Russ Abbot • Debbie Arnold • Jane AsherColin Baker • Floella Benjamin • David BerglasRodney Bewes • Christopher BigginsCilla Black • Brenda Blethyn • Patricia BrakeSir Richard Branson • Johnny BriggsTim Brooke-Taylor • Faith Brown • June BrownFrank Bruno • Max Bygraves • Sir Michael CaineBrian Cant • Jasper Carrott • Frank CarsonChristopher Cazenove • George ColeGraham Cole • Joan Collins • Phil CollinsJess Conrad • John Conteh • Ronnie CorbettBernard Cribbins • Roger Daltrey • Paul DanielsJim Davidson • Dickie Davies • Sharron DaviesRoger de Courcey • Dame Judi DenchDeclan Donnelly • Jason DonovanGlynn Edwards • Bruce Forsyth • Peter GilmoreReg Gutteridge • Haruhisa Handa Ainsley Harriott • Barry Hearn • Bob HolnessBob Hoskins • Jane How • Michael HoweNerys Hughes • Gareth Hunt • David JansonSir David Jason • Gorden Kaye • Kevin KeeganDiane Keen • Henry Kelly • Felicity KendalSarah Kennedy • Eddie Kidd • Burt KwoukBonnie Langford • Eddie Large • George LaytonRosemary Leach • Rula Lenska • Lennox Lewis Gary Lineker • Joanna Lumley • Linda LusardiSandy Lyle • Sir Paul McCartney • Debbie McGeeAnthony McPartlin • Philip Madoc • Ruth MadocRon Moody • Garfield Morgan • Patrick MowerTom O’Connor • Bill Oddie • Richard O’SullivanNick Owen • Nicholas Parsons • Su PollardRobert Powell • Pauline Quirke • Claire RaynerSir Steve Redgrave • Angharad ReesAnneka Rice • Tessa Sanderson • Gerald ScarfePhillip Schofield • Lloyd Scott • Pat SharpIvor Spencer • Michaela Strachan • Eric SykesChris Tarrant • Angela Thorne • David VineDennis Waterman • Kevin WhatelyJune Whitfield • Simon Williams • Gary WilmotFrank Windsor • Terry Wogan • Susannah YorkPaul Young


Independent auditors’ report to the trustees of theFoundation for Children with LeukaemiaInformation about the Charity

34

We have audited the financial statements of Childrenwith Leukaemia for the year ended 31 December2005 which comprise the consolidated statement offinancial activities, the consolidated balance sheet,the consolidated cash flow statement and the relatednotes 1 to 18. These financial statements have beenprepared under the accounting policies set outtherein.

This report is made solely to the charity’s trustees, asa body, in accordance with Regulation 7 of theCharities (Accounts and Reports) Regulations 2005.Our audit work has been undertaken so that we mightstate to the charity’s trustees those matters we arerequired to state to them in an auditors’ report andfor no other purpose. To the fullest extent permittedby law, we do not accept or assume responsibility toanyone other than the charity and the charity’strustees as a body, for our audit work, for this report,or for the opinions we have formed.

Respective responsibilities of trustees andauditors

As described in the statement of trustees’responsibilities, you are responsible as trustees forthe preparation of the financial statements, which arerequired to be prepared in accordance withapplicable law and United Kingdom AccountingStandards (United Kingdom Generally AcceptedAccounting Practice).

We have been appointed as auditors under s43 of theCharities Act 1993 and report in accordance withregulations made under s44 of that Act. Ourresponsibility is to audit the financial statements inaccordance with relevant United Kingdom legal andregulatory requirements and International Standardson Auditing (UK and Ireland).

We report to you our opinion as to whether thefinancial statements give a true and fair view inaccordance with the relevant financial reportingframework and are properly prepared in accordancewith the Charities Act 1993, Regulation 3 of theCharities (Accounts and Reports) Regulations 2005and the trust deed.

We read the trustees’ report and the otherinformation contained in the annual report for theabove year as described in the contents section and

consider the implications for our report if we becomeaware of any apparent misstatements or materialinconsistencies with the financial statements.

Basis of opinion

We conducted our audit in accordance withInternational Standards on Auditing (UK and Ireland)issued by the Auditing Practices Board. An auditincludes examination, on a test basis, of evidencerelevant to the amounts and disclosures in thefinancial statements. It also includes an assessmentof the significant estimates and judgements made inthe preparation of the financial statements and ofwhether the accounting policies are appropriate tothe charity’s circumstances, consistently applied andadequately disclosed.

We planned and performed our audit so as to obtainall the information and explanations which weconsidered necessary in order to provide us withsufficient evidence to give reasonable assurance thatthe financial statements are free from materialmisstatement, whether caused by fraud or otherirregularity or error. In forming our opinion, we alsoevaluated the overall adequacy of the presentation ofinformation in the financial statements.

Opinion

In our opinion:• the financial statements give a true and fair view ofthe charity’s and the group’s state of affairs, inaccordance with United Kingdom Generally AcceptedAccounting Practice as at 31 December 2005 and ofthe group's incoming resources and application ofresources in the year then ended;• the financial statements have been properlyprepared in accordance with the Charities Act 1993,Regulation 3 of the Charities (Accounts and Reports)Regulations 2005 and the trust deed.

Deloitte & Touche LLPChartered Accountants and Registered AuditorsHill House, 1 Little New StreetLondon EC4A 3TR

6th July 2006

CHILDREN with LEUKAEMIA51 Great Ormond Street London WC1N 3JQ

Tel: 020 7404 0808Fax: 020 7404 3666

Email: [email protected]

CONSOLIDATED STATEMENT OF FINANCIAL ACTIVITIES FOR THE YEAR ENDED 31 DECEMBER 2005

Total Totalrestricted unrestricted Total Total

funds funds 2005 2004Note £ £ £ £

Incoming resources

Incoming resources from generated fundsVoluntary Income

Appeals and associated donations - 4,258,932 4,258,932 4,322,815Committed giving - 596,997 596,997 475,279Schools and childrens groups fundraising - 903,477 903,477 1,218,967Running events - 2,336,520 2,336,520 1,862,539Community fundraising - 535,518 535,518 447,017Corporate and trust donations 12 25,000 393,415 418,415 451,827Legacies - 172,625 172,625 595,504

25,000 9,197,484 9,222,484 9,373,948Activities for generating funds

Special events and trading - 480,932 480,932 612,410

Investment income - 209,369 209,369 110,205

Incoming resources from charitable activities - - - 19,079

Other incoming resources 2 - 149,111 149,111 2,300,000

Total incoming resources 25,000 10,036,896 10,061,896 12,415,642

Resources expendedCosts of generating funds:

Costs of generating voluntary income - 1,429,363 1,429,363 1,855,798

Charitable activitiesResearch into Prevention & Causes 8,750 2,011,813 2,020,563 2,760,002Research into Treatment 15,500 2,191,466 2,206,966 2,710,676Welfare - 3,755,144 3,755,144 5,352,030Education - 549,682 549,682 -

Governance costs - 40,582 40,582 54,252

Total resources expended 3 24,250 9,978,050 10,002,300 12,732,758

Net incoming / (outgoing) resources 750 58,846 59,596 (317,116)before transfers

Gross transfers between funds 12 (750) 750 - -

Net incoming / (outgoing) resources before other - 59,596 59,596 (317,116)recognised gains and loses

Gain on revaluation of freehold property - - - 343,076

Net movement in funds - 59,596 59,596 25,960

Funds at the start of the year - 2,015,599 2,015,599 1,989,639

Funds at the end of the year - 2,075,195 2,075,195 2,015,599

All of the above results are derived from continuing activities. There were no other recognised gains or losses other than those stated above. Movements in funds are disclosed in note 12 to the financial statements.The notes on pages 40 to 43 form part of these financial statements.

Consolidated statement of financial activities for the year ended31 December 2005

36Registered Charity No. 298405. Inaugurated in 1988 by Diana, Princess of Wales in memory of Jean and Paul O’GormanCHILDREN with LEUKAEMIA

Financial activities 2005

Incoming resources

Resources expended

Corporateand trust

Legacies

Appeals andassociateddonations42%

Children’s fundraising 9%

Governance Costs<0.5%

Education

Committed giving

Runningevents 23%

Communityfundraising

Special events and trading Investments and other

Welfare38%

Research intoPrevention andCauses20%

Research intoTreatment22%

Costs ofgeneratingfunds14%

6%

4% 4%

4%

5%

5%

2%

CONSOLIDATED CASH FLOW STATEMENT FOR THE YEAR ENDED 31 DECEMBER 2005

Note 2005 2004£ £

Net cash inflow from operating activities a) 182,165 2,952,367

Interest received 209,369 110,205

Increase in cash in the period b) 391,534 3,062,572

Notes to the Cash flow Statement

a) Reconciliation of changes in resources 2005 2004to net cash inflow from operating activities £ £Net incoming / (outgoing) resources before 59,596 (317,116)other recognised gains and lossesInvestment income (209,369) (110,205)Changes in debtors (289,863) 109,627Changes in creditors 621,801 1,959,690Grant of tangible fixed asset - 1,310,371

182,165 2,952,367

b) Analysis of net funds

1 January Cashflow 31 December2005 2005

£ £ £Cash at bank and in hand 4,280,704 391,534 4,672,238


Consolidated cash flow statement for the year ended31 December 2005Consolidated balance sheet as at 31 December 2005

38

CONSOLIDATED BALANCE SHEET AS AT 31 DECEMBER 20052005 2004

Group Charity Group CharityNote £ £ £ £

Fixed assetsInvestments 6 100 - 100 100

Current assetsDebtors and prepayments 8 732,220 - 442,357 442,357Cash at bank and in hand 4,672,238 1,000 4,280,704 4,280,704

Creditors: amountsfalling due within one year 9 (1,310,795) - (1,072,591) (1,072,591)

_________ _________ _________ _________Net current assets 4,093,663 1,000 3,650,470 3,650,470

_________ _________ _________ _________Total assets less current liabilities 4,093,763 1,000 3,650,570 3,650,570

Creditors: amounts falling dueafter more than one year 10 (2,018,568) - (1,634,971) (1,634,971)

Net assets 2,075,195 1,000 2,015,599 2,015,599

Represented by:Unrestricted funds 11 2,075,195 1,000 2,015,599 2,015,599

The notes on pages 40 to 43 form part of the financial statements.Approved and signed on behalf of the Trustees on 4th July 2006

The Earl CadoganTrustee

Eddie O’GormanTrustee


Notes to the financial statements

40

3. Total resources expended Costs ofResearch into generatingPrevention & Research into voluntary

Note Causes Treatment Welfare Education Governance income 2005 Total 2004 Total£ £ £ £ £ £ £ £

Staff costs 13 87,299 64,439 200,557 141,406 - 170,458 664,159 479,502Direct charitable spend 1,933,264 2,142,527 3,554,587 408,276 - - 8,038,654 10,466,471Printing, postage & stationery - - - - - 695,004 695,004 899,025Function and venue costs - - - - - 554,940 554,940 825,338Other expenditure - - - - - 8,961 8,961 8,170Audit fee - - - - 22,325 - 22,325 19,750Other office costs - - - - 18,257 - 18,257 34,502________ ________ ________ ________ ________ ________ __________ __________

2,020,563 2,206,966 3,755,144 549,682 40,582 1,429,363 10,002,300 12,732,758======= ======= ======= ======= ======= ======= ======== ========

4. Support costsSupport costs are allocated to activities as follows:

Costs ofgenerating Research into

voluntary Prevention Research into income & Causes Treatment Welfare Education 2005 Total 2004 Total

£ £ £ £ £ £ £

Central Services 24,425 17,828 15,643 33,809 8,265 99,970 55,883 Operational management 16,580 15,544 9,623 17,469 82,902 142,118 137,717

________ _________ ________ ________ ________ ________ ________

41,005 33,372 25,266 51,278 91,167 242,088 193,600======= ======== ======= ======= ======= ======= =======

Central office overheads are allocated on a per person basis to staff in the office. The time spent by each staff member on every activity of the charity is allocated on amonth by month basis throughout the year. Overheads and staff costs are then allocated to the various charitable activities based on this staff time basis.

5. Costs of charitable activitiesActivities Grant

undertaken funding of Supportdirectly activities costs 2005 Total 2004 Total

£ £ £ £ £Research intoPrevention & Causes 826,720 1,160,471 33,372 2,020,563 2,760,002 Research into Treatment 668,332 1,513,368 25,266 2,206,966 2,710,676 Welfare 1,813,215 1,890,651 51,278 3,755,144 5,352,030 Education 458,515 - 91,167 549,682 -

________ ________ ________ ________ ________3,766,782 4,564,490 201,083 8,532,355 10,822,708======= ======== ======= ======= =======

6. InvestmentsCHILDREN with LEUKAEMIA holds 100% of the share capital of Helping Childrenwith Leukaemia Limited. The net assets of the company as at the year end were£100 (2004: £100). The company did not trade during the year.

7. Trustees' emolumentsThe Trustees received no remuneration or expenses during the year.

8. Debtors 2005 2004£ £

Trade debtors 41,299 53,270Other debtors 239,816 115,592Accrued income 144,202 273,495Prepayments 306,903 -

________ ________732,220 442,357

======= =======

Accrued income represents legacies, as the charity has been formally notified by the personal representative of the estates. The trustees are reasonably certain thatamounts in respect of these legacies will be received after the year end.

9. Creditors: amounts falling due within one year2005 2004

£ £Trade creditors 611 637Taxes and social security 17,781 28,357Short term grants 859,914 403,349Accruals and deferred income 432,489 640,248

________ ________1,310,795 1,072,591======= =======

10. Creditors: amounts falling due after more than one year2005 2004

£ £Long term grants 2,018,568 1,634,971

======= =======

11. Analysis of net assets between fundsUnrestricted Restricted Total Total

funds funds funds funds2005 2005 2005 2004

£ £ £ £Fixed assets 100 - 100 100Net current assets 4,093,663 - 4,093,663 3,650,470Creditors falling due after more than one year (2,018,568) - (2,018,568) (1,634,971)

________ ________ ________ ________Net assets at theend of the year 2,075,195 - 2,075,195 2,015,599

======= ======= ======= =======

12. Statement of fundsAt the start Incoming Outgoing At the endof the year resources resources Transfers of the year

£ £ £ £ £Restricted funds - 25,000 (24,250) (750) -Unrestricted funds 2,015,599 10,036,896 (9,978,050) 750 2,075,195

________ ________ ________ ________ ________Total funds 2,015,599 10,061,896 (10,002,300) - 2,075,195

======= ======= ======= ======= =======

The restricted funds comprised donations given from Trust Funds to be spent onspecific projects and these were all discharged during 2005, all on grants to thirdparties.

£750 was received in 2005 for the purpose of funding the 2004 grant made to DrHugh Brady. Since this grant was paid out in 2004 from unrestricted funds, £750was transferred from restricted back to unrestricted funds during 2005.

13. Staff costs2005 2004

£ £Salaries and wages 549,187 433,180National Insurance 59,558 46,322Pension 55,414 -

________ ________664,159 479,502

======= =======

One employee earned between £100,000 and £110,000 during the year. (2004: one employee earned between £100,000 and £110,000.) No other employee had emoluments exceeding £60,000.The average weekly number of employees during the year, as calculated on a fulltime equivalent basis, was as follows:

Number of employees2005 2004

17 14

All employees contributed to fundraising campaigns, projects and programmesand the management and administration of the charity.

14. Capital commitmentsThere were no capital commitments at 31 December 2005 (2004: Nil).

15. Investment in subsidiaryThe subsidiary, Children with Leukaemia, is a company limited by guarantee andhas no share capital. The liability of members is limited to the sum of £1 permemberThe results of the subsidiary are exactly those shown in the ConsolidatedStatement of Financial Activities since the Foundation was dormant during theperiod.The balance sheet for the subsidiary as at 31 December 2005 is as follows:

2005£

Assets 5,403,558

Liabilities 3,329,363

Unrestricted funds 2,074,195========

16. ControlThere is no controlling party of the Foundation for Children with Leukaemia.

17. Related partiesLord Cadogan is one of the trustees of the operating charity. He is also Chairmanof the Board of Trustees for the Leukaemia Research Fund. The charity gave agrant of £392,228 via the Leukaemia Research Fund during 2005. Lord Cadogandid not take part in discussions concerning the decision to make this grant.

Professor Denis Henshaw is another of the trustees of the operating charity. He isalso the holder of a grant made in 2004 for £1,056,948 which is being paid out tohis institution (the University of Bristol) over the years 2005 to 2009. The balanceat the end of 2005 was £792,711.

Professor Nicholas Priest was a member of the panel of scientific advisers whodetermined the allocation of a funding round during 2005. He received a projectgrant of £15,000 (to be paid to his institution, Middlesex University) but was notpresent for the discussions concerning his grant proposal.

1. Accounting policiesThe principal accounting policies are summarised below. The accounting policieshave been applied consistently throughout the year and the preceding year.

(a) Accounting conventionsThe financial statements are prepared in accordance with applicable accountingstandards and the Statement of Recommended Practice (SORP): Accounting andReporting by Charities, published in March 2005 in all material respects and areprepared under the historical cost convention, as modified by the revaluation offreehold property.

(b) Group status and basis of consolidationThe Foundation for Children with Leukaemia is the ultimate parent company and didnot trade during 2005. The consolidated financial statements incorporate the resultsof the Foundation and Children with Leukaemia, the subsidiary charity using the lineby line basis. The balance sheet for the subsidiary charity is shown in note 15.The operating charity owns the whole of the share capital of Helping Children withLeukaemia Limited, a company registered in England. The company was dormantthroughout the current and previous years. In the opinion of the trustees, thecompany is not material in the context of the overall accounts and therefore, theconsolidated financial statements have not been prepared.

(c) Fund accountingUnrestricted funds comprise accumulated surpluses and deficits on general fundsand are available for use at the discretion of the trustees in furtherance of thegeneral objectives of the charity and have not been designated for other purposes.Restricted funds are funds which are to be used in accordance with specificrestrictions imposed by donors or which have been raised by the charity forparticular purposes. The costs of raising and administering such funds arecharged against the specific fund.

(d) Incoming resourcesIncome is recognised in the period in which the charity is entitled to receipt and theamount can be measured with reasonable certainty.In accordance with this policy, legacies are included when the charity is advised bythe personal representative of an estate that payment will be made or propertytransferred and the amount involved can be quantified.Voluntary income in the form of donations, proceeds of appeals and otherfundraising activities are recognised upon receipt.

(e) Resources expended and basis of allocation of costsAll expenditure is accounted for on an accruals basis and the majority is directlyattributable to specific activities. Other indirect costs are apportioned to activitiesin accordance with staff activity and an assessment of where the resources havebeen applied.

Grants to third parties are included in the SOFA when approved by the trusteeswhen a constructive obligation exists, notwithstanding that they may be paid infuture accounting periods.Support costs include the direct expenditure and overhead costs relating to theappeals and fundraising functions. They also include the allocation of costsincurred to support and co-ordinate fundraising activities. These costs areallocated across the categories of charitable expenditure and the basis of this costallocation has been explained in note 4 to the accounts.Governance costs are the costs incurred to manage the charity in compliance withconstitutional and statutory requirements.

(f) TaxationChildren with Leukaemia, as a registered charity, is exempt from taxation ofincome falling within Section 505 of the Taxes Act 1988 or section 256 of theTaxation of Chargeable Gains Act 1992 to the extent that this is applied to itscharitable objectives. No tax charge has arisen in the year.

(g) Tangible fixed assetsTangible fixed assets costing more than £10,000 are capitalised and included atcost including any incidental costs of acquisition.Depreciation is provided at rates calculated to write off the cost less estimatedresidual value of each asset over its expected useful life, as follows:Freehold property 4% straight lineFixtures and fittings 15% straight line

(h) Pension schemePermanent employees are entitled to join the Grouped Stakeholder Pension Planprovided by Bank of Scotland which was established on 14 September 2001. In2005, the charity made a contribution of 10% of salary per month to any personalor stakeholder pension scheme selected by all permanent employees who electedto take advantage of this benefit. Contributions are taken to the SOFA as theybecome payable.

2. Other incoming resources 2005 2004£ £

Reversal of grant for running costs of Paul O'Gorman House 105,000 -Repayment of University of Bristol grant 44,111 -Repayment of Lifeline Building grant - 2,300,000

________ ________149,111 2,300,000

======= =======

NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2005

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aul O

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Life

line

and

Bo

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rans

pla

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Uni

ts, v

ario

us h

osp

itals

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ntin

uatio

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f fu

ndin

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ow

ard

s th

e tr

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ent

of

leuk

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fro

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r N

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rist

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Pro

ject

fun

din

g -

S

trat

ifica

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of

chem

oth

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ased

on

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inim

al r

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-39

2,22

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666,

422

Dr

Jose

ph

Wie

mel

s, U

nive

rsity

of

Cal

iforn

ia, S

an F

ranc

isco

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roje

ct f

und

ing

(36

mo

nths

): A

etio

log

y o

f t(

1;19

) E2A

-PB

X1+

leuk

aem

ia: a

n in

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rativ

e re

sear

ch p

roje

ct.

161,

110

--

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rofe

sso

r E

ric

Wri

ght

, Uni

vers

ity o

f D

und

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edic

al S

cho

ol.

Pro

ject

fun

din

g (3

6 m

ont

hs):

Inve

stig

atio

n o

f m

icro

envi

ronm

enta

lly-m

edia

ted

dam

age

as a

pro

mo

tiona

l fac

tor

in c

hild

hoo

d le

ukae

mia

.13

8,49

3-

--

Pro

fess

or

Gla

dys

Blo

ck, U

nive

rsity

of

Cal

iforn

ia, B

erke

ley.

Pro

ject

fun

din

g (3

6 m

ont

hs):

Eff

ect

of

mat

erna

l and

chi

ld d

iet

and

fo

late

met

abo

lism

gen

e va

rian

ts o

n ch

ildho

od

leuk

aem

ia r

isk.

133,

022

--

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etan

Pat

el, M

RC

Lab

ora

tory

of

Mo

lecu

lar

Bio

log

y, C

amb

rid

ge.

Pro

ject

fun

din

g (3

6 m

ont

hs):

Iden

tific

atio

n an

d c

hara

cter

isat

ion

of

nove

l gen

es t

hat

func

tion

in t

he F

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ni a

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ia s

upp

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or

pat

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--

Pro

fess

or

Pat

rici

a B

uffle

r, U

nive

rsity

of

Cal

iforn

ia, B

erke

ley.

Pro

ject

fun

din

g (3

6 m

ont

hs):

Ind

ivid

ual g

enet

ic s

usce

ptib

ility

and

env

iro

nmen

tal e

xpo

sure

s in

the

aet

iolo

gy

of

child

hoo

d le

ukae

mia

. 11

0,66

6-

--

Dr

Leek

a K

heife

ts, U

nive

rsity

of

Cal

iforn

ia, L

os

Ang

eles

. Pro

ject

fun

din

g (2

4 m

ont

hs):

Up

dat

ed p

oo

led

ana

lysi

s o

f ch

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od

leuk

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ia a

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agne

tic f

ield

s.11

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6-

--

Dr

Cra

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ona

ldso

n, U

nive

rsity

of

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t o

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ngla

nd. P

roje

ct f

und

ing

(24

mo

nths

):A

stu

dy

of

hum

an N

KT

cel

ls in

ste

m c

ell t

rans

pla

nt r

ecip

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s.-

94,1

40-

39,5

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r M

Tev

fik D

ora

k, U

nive

rsity

of

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cast

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roje

ct f

und

ing

(24

mo

nths

):G

enes

influ

enci

ng b

od

y ir

on

cont

ent

and

chi

ldho

od

leuk

aem

ia r

isk.

93,5

32-

--

Pro

fess

or

Rus

sel R

eite

r, U

nive

rsity

of

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as. P

roje

ct f

und

ing

(24

mo

nths

):Li

ght

at

nig

ht, m

elat

oni

n an

d e

xper

imen

tal l

euka

emia

pro

gre

ssio

n.72

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--

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r R

icha

rd F

eltb

ow

er, U

nive

rsity

of

Leed

s. P

roje

ct f

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ing

(18

mo

nths

): D

oes

po

pul

atio

n m

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easu

re in

fect

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exp

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unity

leve

l?69

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--

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r M

alco

lm T

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nive

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of

Man

ches

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or

pur

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e o

f D

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seq

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vid

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ildre

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.-

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Pro

fess

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war

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ects

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ussi

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mo

nths

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f th

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le o

f m

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par

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cost

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f p

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ervi

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amili

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ildre

n w

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ukae

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006.

--

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Pau

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Pro

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ashi

ngto

n D

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tud

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of

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rela

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hip

bet

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viro

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exp

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nd c

hild

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rofe

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r N

icho

las

Pri

est,

Mid

dle

sex

Uni

vers

ity. P

roje

ct f

und

ing

(12

mo

nths

):E

nvir

onm

enta

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tivity

as

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use

of

leuk

aem

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Dr

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rad

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stitu

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lth, L

ond

on.

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ds

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n R

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2005

co

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739

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tal c

ause

s o

f ch

ildho

od

leuk

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--

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322,

309

Dr

Hug

h B

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rman

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--

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42 43

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Transcript of & Accounts 2005 Annual Report - Children With Cancer UK · Leukaemia is cancer of the blood. ......