& Accounts 2004 Annual Report - next-up. · PDF fileRegistered Charity No. 298405. Inaugurated...

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 2004


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Fighting Britain’s biggest child killer disease

Foreword by the ChairmanIndex

PAGE

Foreword by the Chairman 3

Information about the Charity 4

How we began 5

What is leukaemia? 6

First international conference on the causes and prevention of childhood leukaemia 8

Developing young talent in leukaemia research 10

Focus on research: 12

Radiation and childhood leukaemia 12

Stratification of chemotherapy based on levels of minimal residual disease 14

Understanding infant leukaemia 15

Paul O’Gorman centres of excellence in childhood leukaemia research 16

Institute of Child Health, Great Ormond Street Hospital, London 16

Northern Institute for Cancer Research, University of Newcastle upon Tyne 16

Paul O’Gorman Leukaemia Research Centre, University of Glasgow 16

Institute of Cancer Sciences, University College London 17

Relief of suffering: 18

Paul O’Gorman Patient Hotel, Great Ormond Street Hospital 18

Paul O’Gorman House, Royal Free Hospital 19

Lifeline 19

Paul O’Gorman Respite Centre, Green Hedges 19

CHASE Hospice Care 19

The 17th Amazing Great Children’s Party 20

Raising awareness 21

The Third Children’s Marathon Challenge 22

Where does the money come from? 23

Running events 23

Special events 24

Appeals 26

Trustees’ policies and responsibilities 27

Independent auditor’s report 28

Statement of Financial Activities 29

Balance sheet 30

Financial activities 2004 31

Cash flow statement 32

Notes to the accounts 32-35

32

2004 has been a year of growthand modernisation forCHILDREN with LEUKAEMIA.What began as a small memorialcharity back in 1988 is nowhandling more than 1,000donations on an average day.This enabled our annualcharitable expenditure to passthe £10 million mark for the veryfirst time in 2004. The followingpages describe how these fundswere raised and spent.

As trustees, we face theperennial difficulty of balancingthe needs of children who needour help now, in the form ofbetter treatment and support,with the need to unravel thecauses of childhood leukaemiaand so protect futuregenerations of children. As youread this report I hope that youwill feel that we have got thebalance right.

The year saw a major switch inour research funding portfolio –funding more research and fewerbuildings. We continued toinvest in the provision of welfareservices and also to carry on ourwork to increase publicunderstanding of the nature and

The continued growth in ourincome and expenditure hasdemanded a strengthening ofour financial management andthis has been achieved with theappointment of Ros Lewis as ourfirst Head of Finance, theengagement of Sayer Vincent asinternal auditors and theselection of Deloitte to take onthe increasingly specialist role ofexternal auditor with effect from2005. The Charity has also beenincorporated to LimitedCompany status to achievemodernisation of our charitableobjectives and governancestructure and opening the way towidening the trustee base in2005.

As ever, we are indebted to ourfriends, staff, volunteers andsupporters whose continuingdedication has made possiblethe vital work described over thecoming pages. On behalf of thetrustees I would like to recordour gratitude for their help inhonouring the memory of Jeanand Paul through the life-savingwork of CHILDREN withLEUKAEMIA.

extent of the problem ofchildhood leukaemia.

Our commitment to causationand prevention was reinforcedby our successful conference onthe causes and prevention ofchildhood leukaemia – the firstever international conference onthis theme. During theconference we launched a new£1 million fund for research intothe causes of childhoodleukaemia. The first tranche ofmoney was awarded as PaulO’Gorman Prizes to promisingyoung researchers presentingtheir work at the conference. Theremainder is to be distributed asproject grants to researcherswho successfully apply forfunding.

On the welfare front, 2004 sawthe opening of the PaulO’Gorman Patient Hotel at GreatOrmond Street Hospital, takingthe number of Paul O’Gormanwelfare facilities to four. Thegrant of Green Hedges and thecompletion of transfer of PaulO’Gorman House to the RoyalFree Hospital close a chapter onus operating this kind of facilityourselves.

£2.0m

£2.6m

£3.1m

£4.1m

£3.8m

£4.4m

2001 (£4.6m) 2002 (£7.2m) 2003 (£8.2m)

£6.5m

£4.4m

2004 (£10.9m)

Grants to third parties

Campaigns, projects andprogrammes

Charitable expenditure exceeded £10 million for thefirst time in 2004

Information about the Charity How we began

4

In February 1987 leukaemia killedPaul O’Gorman. He was fourteenyears old. The O’Gormans’ agonydid not stop there. Just ninemonths later cancer also killedPaul’s sister, Jean.

Always a caring boy, Paul hadmade his parents promise to helpother children with leukaemiaand within weeks of his deaththey started fundraising.

In November 1987, just daysafter Jean’s death, they metDiana, Princess of Wales. Deeplymoved by the double tragedy,she personally helped start this

charity which she inaugurated inJanuary 1988.

The Paul O'Gorman Foundation

for Children with Leukaemia is

today simply called CHILDREN

with LEUKAEMIA but Paul's spirit

continues to inspire our work.

What began as a small memorial

charity is now Britain’s leading

charity dedicated exclusively to

the conquest of childhood

leukaemia through pioneering

research, new treatment and

support of leukaemic children

and their families.

5

CHILDREN with LEUKAEMIA is theregistered working name of theFoundation for Children withLeukaemia (formerly The PaulO'Gorman Foundation for Childrenwith Leukaemia) which wasconstituted as a charity under a TrustDeed dated 4 January 1988, inmemory of Paul O’Gorman who diedon 6 February 1987 and his sisterJean, who died on 3 November1987. The Charity was inauguratedby Diana, Princess of Wales on 12January 1988 at Mill Hill County HighSchool where Paul had been a pupil.

The objects of CHILDREN withLEUKAEMIA during the year of2004 were:

• The relief of childrensuffering from leukaemia.

• The promotion of researchinto the causes ofchildhood leukaemia.

• The promotion of researchinto the treatment and cureof childhood leukaemia.

Details of the Charity's activitiesare available from the principaloffice of the Charity: 51 Great Ormond Street London WC1N 3JQ

Tel: 020 7404 0808Fax: 020 7404 3666email: [email protected]

The current serving Trusteeswho all served for the whole ofthe year are:

Eddie O'Gorman (Chairman)The Earl Cadogan DL

The Lord Carlisle of Bucklow PC, QC, DL

Marion O'Gorman

Registered Charity Number:298405

Solicitors:Nabarro NathansonLacon House, Theobald’s RoadLondon WC1X 8RW

Auditors:UHY Hacker YoungSt Alphage House, 2 Fore StreetLondon EC2Y 5DH

Bankers:National Westminster Bank Plc30 North Audley StreetLondon W1A 4UQ

Developments since yearendOn 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.

The objects of the new companyare:

• The relief of childrensuffering with leukaemia.

• To raise public awarenessand knowledge in mattersrelating to childhoodleukaemia.

• The promotion ofresearch into the causes,alleviation, prevention,treatment and cure ofchildhood leukaemia andto publish the results ofsuch research.

CHIEF EXECUTIVEEdward Copisarow

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

FRCPath, DSc (Chairman)Prof. J. M. Chessells, MD, FRCP, FRCPathProf. M. Coleman, BM, BCh, MSc, MFPhmProf. N. E. Day, MA, PhD, MRCPathProf. J. Golding, MA, PhD, FSS, DScProf. J. M. Goldman, DM, FRCP, FRCPathProf. D. L. Henshaw, BSc, PhDProf. H. G. Prentice, MB, FRCP, FRCPath

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

CELEBRITY FRIENDSJeremy Beadle (Chairman)Russ Abbot • Debbie ArnoldJane Asher • Colin BakerFloella Benjamin • David BerglasRodney Bewes • Christopher BigginsCilla Black • Brenda BlethynPatricia Brake • Sir Richard BransonJohnny Briggs • Tim Brooke-TaylorFaith Brown • June BrownFrank Bruno • Max BygravesSir Michael Caine • Brian CantJasper Carrott • Frank CarsonChristopher Cazenove • George ColeGraham Cole • Joan CollinsPhil Collins • Jess ConradJohn Conteh • Bernard CribbinsRoger Daltrey • Paul DanielsJim Davidson • Dickie DaviesSharron Davies • Roger de CourceyDeclan Donnelly • Jason DonovanGlynn Edwards • Bruce ForsythPeter Gilmore • Reg GutteridgeHaruhisa Handa • Ainsley HarriottBarry Hearn • Bob HolnessBob Hoskins • Jane HowMichael Howe • Nerys HughesGareth Hunt • David JansonDavid Jason • Gorden KayeKevin Keegan • Diane KeenHenry Kelly • Felicity KendalSarah Kennedy • Eddie KiddBurt Kwouk • Bonnie LangfordEddie Large • George LaytonRosemary Leach • Rula LenskaLennox Lewis • Gary LinekerJoanna Lumley • Linda LusardiSandy Lyle • Sir Paul McCartneyDebbie McGee • Anthony McPartlinPhilip Madoc • Ruth MadocRon Moody • Garfield MorganPatrick Mower • Tom O’ConnorBill Oddie • Richard O’SullivanNick Owen • Nicholas ParsonsSu Pollard • Robert PowellPauline Quirke • Claire RaynerAngharad Rees • Anneka RiceLinda Robson • Tessa SandersonGerald Scarfe • Phillip SchofieldLloyd Scott • Pat SharpIvor Spencer • Michaela StrachanEric Sykes • Chris TarrantAngela Thorne • David VineDennis Waterman • Kevin WhatelyJune Whitfield • Simon WilliamsGary Wilmot • Frank WindsorTerry Wogan • Susannah YorkPaul Young

What is leukaemia?


Leukaemia is a cancer affecting

the blood-forming cells in bone

marrow. It is the most common

childhood cancer and it kills more

children than any other disease in

the UK.

In leukaemia, normal control

mechanisms in the blood break

down and the bone marrow starts

to produce large numbers of

abnormal white blood cells,

disrupting normal production of

blood cells.

There are two main types of

leukaemia in children - acute

lymphoblastic leukaemia (ALL)

and acute myeloid leukaemia

(AML). These acute forms of

leukaemia come on quickly and

progress rapidly if left untreated.

ALL accounts for 85 per cent of all

cases of childhood leukaemia. It is

the only form of leukaemia – and

one of the few forms of cancer –

that is more common in children

than in adults, occurring most

commonly in children between the

ages of two and four years.

Without effective treatment, both

ALL and AML are rapidly fatal –

only 40 years ago the survival rate

was less than five per cent.

Thankfully, today’s children have a

much brighter outlook since

remarkable breakthroughs in

treatment mean that three in four

children now survive.

However over the same period in

which the number of deaths from

childhood leukaemia has been

falling, the number of new cases

diagnosed each year has been

rising. Children under the age

of five years are worst

affected - over half of all

childhood leukaemias

occurred in this

age group in

the period

1996 -

2000.

The reasons for the increasing

incidence remain unclear.

Despite the breakthroughs that

have been achieved in the

treatment of the disease, we still

know very little about what

causes childhood leukaemia.

This is now one of the main

priorities of our research

programme.

“...only 40 years ago thesurvival rate was lessthan five per cent.Thankfully, today’schildren have a muchbrighter outlook sinceremarkablebreakthroughs intreatment mean thatthree in four childrennow survive.”

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Mortality Survival

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From presentation by ProfessorMichel Coleman and Anjali Shah,CHILDREN with LEUKAEMIAInternational ScientificConference, September 2004.

Leukaemia incidence, mortality and survival trends, England and Wales, 1911 to 2000.


First international conference on the causes and prevention of childhood leukaemia

8

The increasing incidence ofchildhood leukaemia, combinedwith emerging concerns about thelong-term effects of leukaemiatreatments, made prevention atop priority for us in 2004.

In September we hosted the firstever international conferencefocusing on the causes ofchildhood leukaemia. Theconference attracted delegatesand speakers from leadingresearch centres around theworld. Over five days, thesescientists shared their findingsand exchanged their expertviews, all with one purpose inmind – the prevention ofchildhood leukaemia.

The presentations included someground-breaking research, withtopics ranging from the role ofviruses and infections inchildhood leukaemia to theeffects of ionising and non-ionising radiation, ‘light at night’and melatonin suppression, airpollution and diet. By bringingtogether scientists from a rangeof disciplines and from all over theworld, the conference stimulateda great deal of discussion anddebate, generating new ideaswhich we hope will flow throughinto the research setting.

The conference generatedextensive broadsheet coverageas well as national television and

radio exposure, with diversestories covering the range oftopics presented during theconference. This helped to raiseawareness of the need forfurther research into the causesof childhood leukaemia andboosted awareness of thecharity’s vital work to a new highwhere one in seven adults inGreat Britain had heard of ourwork.

To increase the pace of research,we announced new funding of£1 million for projectsinvestigating the causes ofchildhood leukaemia. Wereceived applications totallingalmost £5 million and as weenter 2005 we face the difficulttask of deciding which projectsare most worthy of support. Wemust also raise the £1 millionneeded to pay for the selectedprojects.

We are indebted to ProfessorDenis Henshaw, who chaired theConference ScientificCommittee, and to all membersof the Committee for their hardwork and dedication in ensuringthe success of our first everconference.

Conference ScientificCommittee:

Professor Denis Henshaw, University of Bristol (Conference Chairman)Professor Bryn Bridges, University of SussexProfessor Michel Coleman, London School of Hygiene andTropical MedicineDr Thomas Erren, University of CologneProfessor Dudley Goodhead, MRC HarwellProfessor Roy Harrison, University of BirminghamAlasdair Philips, Powerwatch


Developing young talent in leukaemia research

10

One of our aims has

always been to attract

young talent into

leukaemia research, to

nurture in tomorrow’s top

scientists an interest and

enthusiasm for solving

some of the complexities

of childhood leukaemia.

Previously we have funded

PhD students at both the

University of Bristol and

the London School of

Hygiene and Tropical

Medicine.

To encourage the

participation of young

scientists in our

conference we announced

our intention to award

prizes for the best ‘poster

presentations’ presented

by scientists under the age

of 30 years. Members of

the judging panel were

impressed with all 17

entries but the six Paul

O’Gorman Poster Prizes

were awarded to the

following authors:

• Elizabeth Ainsbury,

23 years old

University of Bristol

"An investigation into

polarisation as a possible metric

with regard to human exposure

to ELF magnetic fields from

appliances within the home"

• Donna Hammal,

29 years old

University of Newcastle upon

Tyne

"Paternal occupation as a risk

factor for leukaemia and non-

Hodgkin’s lymphoma in children

and young adults. A study from

the north of England."

• Marilyn Kwan,

28 years old

University of California,

Berkeley

"Food consumption of children

and risk of childhood leukaemia"

• Michelle Morrow,

27 years old

Paul O’Gorman Centre for

Childhood Leukaemia, Institute

of Child Health, London

"Functional analysis of TEL-AML1

fusion protein in haemopoietic

progenitor cells in vivo and in vitro."

• Stuart Peirson,

28 years old

Imperial College London

"Experimental validation of novel

and conventional approaches to

quantitative real-time PCR data

analysis"

The host institutions ofeach of these six youngresearchers were awardeda grant of £15,000, with thestipulation that the fundsbe used to support anyaspect of the researcher’swork relevant to childhoodleukaemia. Prize winnershave been asked toprovide a report in oneyear’s time on how theyhave spent the funds.

The intention behind theseawards is to give thesepromising young scientiststhe opportunity to pursuesome innovative newresearch into childhoodleukaemia, pump-primingnew lines of enquiry. Whoknows where this mightlead?

• Kevin Urayama, 27 years oldUniversity of California, Berkeley"Influence of cytochrome P450 IAIgenetic polymorphisms on theassociation between residentialexposure to traffic and childhoodleukaemia"

Poster prize winner Dr Michelle Morrow outside thePaul O'Gorman ResearchCentre, Great Ormond Street, where she works withCHILDREN with LEUKAEMIAgrant-holder Dr Hugh Brady


Focus on research

12

We continue to fund a widevariety of research projects andin 2004 we were able to increaseour research grant expenditureby one third – to £3.7 million.Over the next few pages wedescribe some of the projects weare funding.

Radiation andchildhood leukaemia

Professor Denis Henshaw andteam in the Human RadiationEffects Group at the University ofBristol received funding of £1.3million in 2004 – a five year grantto enable them to continue theirground-breaking work examiningthe effects of electromagneticfields on human health.

We have been funding the teamat Bristol for nine years now, inwhich time the link betweenelectromagnetic fields (such asthose given off by high voltagepower lines) and childhoodleukaemia has become widelyaccepted. In response to thegrowing body of evidence,agencies such as the UKNational Radiological ProtectionBoard (NRPB), the InternationalAgency for Research on Cancerand the US National Institute ofEnvironmental Health Scienceshave now agreed that electricand magnetic fields are possiblehuman carcinogens. NRPBguidelines now caution againstprolonged exposure at 0.4microTesla (the level at whichstudies have found a doubling ofrisk of childhood leukaemia).

However the mechanism bywhich these fields act to causeleukaemia remains unclear.Professor Henshaw’s team havedemonstrated how high voltagepower lines emit electricallycharged ‘corona ions’ that cancreate tiny ‘nano-particles’ of airpollution, capable of penetratingdeeply into the lung and passinginto the blood stream.

Professor Henshaw has alsoworked with Professor RusselReiter of the University of Texasto develop the ‘Melatoninhypothesis’ which has beenproposed as a means by whichexposure to magnetic fieldsincreases the risk of leukaemia.The theory is that magnetic fieldssuppress the body’s productionof melatonin, a hormone whichhas been proved to act as anatural anti-cancer agent. Anyreduction in melatonin levels maytherefore reduce the body’sability to protect itself againstcancer. Exposure to light at nightis thought to have a similar effecton melatonin production.

Richard Box, artist in residenceat the University of Bristol,helped draw attention to thedangers of usually invisibleelectromagnetic fields, by‘planting’ 1,301 fluorescentbulbs under a power line. Thetubes are powered only by theemissions from the overheadcables. This striking imageattracted widespread mediaattention, including the frontpage of The Independent.

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Focus on research

14

Paul Archer, Research Technician.Cell fraction containing leukaemic cells beingseparated from bone marrow samples

Extraction of the DNA from separated cells.

Scientists in Bristol using the latesttechnique to measure Minimal ResidualDisease. This provides the information thechild’s doctor needs to determine the righttreatment regime.

Dr Nigel Wood: Real-time quantitative MRD assayin preparation

Dr Jeremy Hancock, Scientific Co-ordinator:Analysis of real-time quantitative MRD assay

Clinical trial: stratification ofchemotherapy based onlevels of minimal residualdisease

In 2004 we made a further granttowards a study being led by DrNick Goulden of Bristol RoyalHospital for Children. Workingwith colleagues fromlaboratories in Bristol, Glasgow,London and Sheffield, DrGoulden is co-ordinating anational clinical trial of a newmolecular technique formeasuring the precise number ofleukaemia cells in a child’s bonemarrow – known as minimalresidual disease or MRD.

The level of MRD present in achild’s bone marrow when theycomplete their first 28-days ofchemotherapy has been shownto be a good indicator of relapserisk and use of the newmeasurement technique hasbeen incorporated into thecurrent national childhoodleukaemia trial, ALL 2003.Doctors and scientists areworking together to establishwhether children’s treatmentregimes can be individuallytailored according to their MRDstatus.

The theory is that children withlow level MRD are respondingwell to chemotherapy and could

have their dose reduced at anearly stage, reducing the risk oflong term side effects withoutcompromising the chance of acure. On the other hand, thosechildren who have high levelMRD are responding badly andcould benefit from earlyintensification of therapy toreduce their risk of relapse andmaximise their chance ofsurvival.

420 children were registered onthe trial by the end of year oneand are now progressingthrough their treatment. Thesetrials should result in increasedsurvival rates and a reduction inthe serious long-lasting sideeffects which can be caused bythe high doses of powerful drugsused to treat leukaemia inchildren.

This project has been acclaimedas the most promising wayforward in improving theprognosis for children withleukaemia. We have so farcontributed £1.44 million and willcontinue fundraising until wereach the £2 million necessary tocomplete this stage of the trials. We are deeply grateful to Bunzlwho have now contributed£40,000 towards this project, tothe Foyle Foundation who havemade a grant of £26,000 and toall the other trusts, companiesand individuals who have helpedfund this important work.

Understanding infantleukaemia

We awarded a further grant of£666,372 to Dr Hugh Brady atthe Institute of Child Health,topping up the funding that wasawarded last year to fund DrBrady’s full five-year programmeof work.

The high overall cure rate forchildhood leukaemia masks anextremely poor outlook forchildren with certain forms of thedisease. Children who arediagnosed with leukaemia atless than one year of age have aparticularly poor prognosis.Fewer than 20 per cent will reachtheir fifth birthday.

Working in collaboration withtheir colleagues at GreatOrmond Street Hospital, DrBrady and his team at theInstitute of Child Health aremaking important discoveriesabout the genetic changeswhich lead to infant leukaemia.

Dr Brady, who is Head of theMolecular Haematology andCancer Biology Unit, explains:

"The vast majority of infantleukaemias are caused by agenetic change involving a breakwithin the MLL gene onchromosome 11. The brokenchromosome then fuses withother broken chromosomes(usually chromosome 4), forminga new gene at the fusion point.This leads to the production of anovel protein which switches on

genes in white bloodcells in an inappropriateway, causing them tomutate into leukaemiacells."

The team are breakingdown this complexseries of events tounderstand preciselywhat happens at eachstage. Havingdiscovered which genesare switched on in thewhite blood cells as aresult of thechromosome fusion, theteam now have a two-pronged approach:

• To determine theeffects of these geneson the development,proliferation andresilience of leukaemiccells by expressing thegenes in bone marrowstem cells; and• To define the role ofthe same genes in thenormal function of thebone marrow stemcells, ie. what happensto cells if this gene isdeleted?

The ultimate aim of thisprogramme of work isto improve the pooroutlook for infants withleukaemia bydeveloping newtreatments which caneffectively block theseries of events whichare causing their whiteblood cells tomalfunction.

Using the DNA sequencer enables scientists todetermine genetic changes within individual nucleotidesof DNA.

Examination of especially prepared leukaemic blood cellsto find ways of blocking their development.

Manipulation of leukaemic blood cells in culture to enableidentification of the target gene sets.

Scientists at Great Ormond Street studying the geneticchanges which lead to infant leukaemia. This shouldpave the way for new, more effective treatments.


Paul O’Gorman centres of excellence in childhood leukaemia research

As a new charity back in 1988, ourfirst goal was to raise £2 millionfor a new leukaemia researchcentre at London’s Great OrmondStreet Hospital for Children. Ittook seven years for us to achievethis goal, but the Paul O’GormanChildhood Leukaemia ResearchCentre there now houses one ofthe UK’s leading childhoodleukaemia research teams.

Our commitment to the PaulO’Gorman Centre at GreatOrmond Street continues and wehave also established further PaulO’Gorman Research Centres inBristol, Manchester andNewcastle. Two new PaulO’Gorman facilities will soon beopening – at the Institute ofCancer Sciences in London andat the University of Glasgow.

Paul O’Gorman Building,Northern Institute for CancerResearch, Newcastle uponTyne

The latest Paul O’Gorman Centreto open is at the University ofNewcastle where the new PaulO’Gorman Building houses theNorthern Institute for CancerResearch. The three-floor centrehas four laboratories and bringstogether 120 scientists from fourdifferent sites across theUniversity.

Professor Herbie Newell,Newcastle University Head ofCancer Therapeutics, said "Thenew facilities will provide a major

boost for our research. They willhelp scientists to collaboratemore effectively and enable us tofast track new treatments fromthe laboratory bench to thepatient’s bedside. Our aim is toidentify two new targets for anti-cancer drugs each year and totake one treatment fromdevelopment in the lab to clinicaltrials."

We were able to completepayment of our £2 million pledge

in 2004, helped by thesponsorship success ofCHILDREN with LEUKAEMIArunners in the 2004 BUPA GreatNorth Run.

The Paul O’GormanLeukaemia Research Centre,University of Glasgow

We are working with the

Leukaemia Research Fund and the

University of Glasgow to provide a

major new leukaemia research

centre which will bring together

Glasgow’s existing leukaemia

expertise. Haematology research

is currently scattered around six

different sites in Glasgow, making

collaboration much more difficult

than it might otherwise be since it

means that routine NHS work,

essential research and clinical

activity are separated, with staff

often working with outdated

equipment or inadequate facilities.

The new centre, due to open in

autumn 2005, will provide a

much-needed translational

research laboratory that will give

both clinicians and researchers

access to the most advanced

facilities and equipment. We have

pledged to try to raise £500,000

towards the £2.25 million cost of

the new centre and have so far

raised and given £300,000

towards this pledge.

The Institute of CancerSciences, Paul O’GormanBuilding, University CollegeLondon

Work began in the summer of2004 on the new Institute ofCancer Sciences which willcoordinate all of UCL’s cancerresearch, providing a focus forexcellent basic science andtranslational studies across theCollege’s different sites. TheInstitute will ultimately house over200 scientists.

The Department of Haematologywill occupy a quarter of the spaceof the new Institute, with half oftheir resource being devoted toresearch into the causes andtreatment of leukaemia. It isintended to establish a newprofessorial unit there dedicatedto the study of leukaemia inadolescents.

The relationship betweenCHILDREN with LEUKAEMIA andUCL is now 17 years old and weare pleased to support thedevelopment of this new centre ofexcellence. We have pledged totry to raise £2 million towards the£30 million cost of the newbuilding, due to open in 2006, andhave so far raised and given£500,000 towards this total.

16

The Paul O'Gorman Building,housing the Northern Institute for Cancer Research, openedin November 2004.


Relief of suffering

Paul O’Gorman Patient Hotel,Great Ormond Street

In 2004 we paid the first £1million of the £2 million we planto raise towards a wonderfulnew facility for children beingtreated at Great Ormond StreetHospital (GOSH) – the PaulO’Gorman Patient Hotel.

As one of the UK’s leadingchildren’s hospitals, GOSH is anational centre of excellence formany conditions and childrentravel from all over the UK to betreated there. The Hospital is theUK’s biggest referral centre forchildhood leukaemia, with theteam there treating almost onefifth of all cases.

The team at GOSH face anenormous demand on theirservices and have developed anew model of care to help keeppace. Their aim is to keep non-critical children out of the acutewards. Not only does thisminimise the amount of time thatchildren spend in hospital anddisruption to their lives, but ithelps to ensure that beds areavailable for the most criticalpatients.

The Paul O’Gorman PatientHotel, which opened in October2004, is part of this model,supporting the work of thehospital’s daycare wards,including Elephant Daycare, thecancer day care unit. Just across

the road from the Hospital, thisfree ‘Hotel’ provides somewheresafe, comfortable andconvenient for parents andchildren to stay before and aftertreatment. Children must usuallyarrive at 8am to begin theiroutpatient treatment. Early guestMaggie from Rochester, whosethree year old child is beingtreated for leukaemia, told howthey previously had to leavehome by 5.45am to be at theHospital by 8am. Now they cantravel to London the day beforeand have a restful night at theHotel. Being able to stay thenight after treatment is also arelief for children and parentsexhausted after a day’s gruellingtherapy.

Paul O’Gorman House

During its first year of operation,Paul O’Gorman House hasprovided 471 nights’accommodation to the parentsof children being treated forleukaemia and cancer at theRoyal Free Hospital.

Situated five minutes’ walk fromthe hospital, Paul O’GormanHouse gives parents somewhereto go once their child has settledfor the night. They can relax,cook dinner and get a goodnight’s sleep in comfortable,spacious accommodation, safein the knowledge that they areclose by if their child needsthem.

We granted the House to theTrustees of the Hospital at theend of 2003, along with fiveyears’ running costs, and we aredelighted that it is being so wellused. Putting the Hospital incontrol of the facility means thatthe staff on the ward can provideimmediate access for familieswho need it. One family stayedfor 47 consecutive nights,showing just how important it isfor them to have a local basewhilst their child is in hospital.Paul O’Gorman underwent hisleukaemia treatment at the RoyalFree and his parents know onlytoo well how hard it can be forfamily members, often having tosteal what sleep they can inwaiting room chairs or simplylying on the hospital floor. Thiswas our motivation behindestablishing this newaccommodation facility.

Lifeline

In 1996 we began ourassociation with what was thencalled ‘Russian Lifeline’,contributing to the cost of bonemarrow transplants atHammersmith Hospital for twoteenage leukaemia sufferersfrom St Petersburg. Alexey andSasha are now healthy youngadults.

Over the years Lifeline’s workhas widened to include childrenfrom other countries wherechildren do not have access tolife-saving leukaemia treatment,including Georgia, Krygyzstanand Ukraine. Lifeline’s long-termaim is to support thedevelopment of local facilitiesand expertise so that children nolonger have to travel overseasfor treatment. But this is a longjob and in the meantime thereare seriously ill children whocannot wait.

The number of children beingreferred to Lifeline is increasingrapidly and in 2004 they dealtwith referrals for 107 children,taking to 265 the total number ofchildren helped. We respondedby increasing our funding to£800,664, directly funding thecost of medical treatment forthese children. Our partnershipwith Lifeline enables them tocontinue helping the childrenwho need urgent treatmenttoday whilst building the localresources to treat the childrenwho will need help tomorrow.

Green Hedges

For eleven years we have beenoffering families going throughthe trauma of leukaemiatreatment the opportunity toenjoy a free seaside holiday atthe Paul O’Gorman RespiteCentre, Green Hedges in WestSussex. As part of a review andconsolidation of our activities in2004 Green Hedges was grantedto the trustees of the Venik Trust,along with one year’s runningcosts. The Venik Trust willcontinue to use the facility forthe benefit of children withleukaemia but, with itsconsiderable expertise in caringfor patients and their families,Venik will be best placed to usethis limited resource to optimaleffect.

CHASE Hospice Care

CHASE Children’s HospiceService provides help to childrenwho are not expected to reachtheir 19th birthday. They offercare and support in the familyhome and at St Christopher’s,their hospice in Guildford,working with families through tobereavement and beyond. In2004 we were able to provide agrant of £100,000. This was usedto help meet the cost of theservices for the families ofchildren whose leukaemiatreatment had failed.

18

Eddie and Marion O'Gormanwith HRH Princess Alexandra at the opening of the Paul O'Gorman Patient Hotel.

On 13th October 2004 LloydScott, our best known fundraiser,set off across Australia on apenny farthing. His challengewas to cycle across some of themost inhospitable terrain on theplanet - from Perth to Sydney.

After completing challenges onsix of the seven continents –including walking the FloraLondon Marathon in a deep seadiving suit and finishing the firstever underwater marathon inLoch Ness, Lloyd made historyagain, reaching his destination ofBondi Beach, Sydney after 50days and 2,642 miles. Thejourney was full of incidents,

including numerous closeencounters with thundering roadtrains and all manner of localwildlife. He pedalled his waythrough extreme weatherconditions – ranging fromblistering heat to torrential rainand gale force winds.

Said Lloyd, who has himselfsuffered from leukaemia "Attimes it reminded me of mybattle against leukaemia: a long,slow, often painful struggle.Fortunately the outcome wasonce again successful."

By completing this remarkablefeat, Lloyd raised £322,262 for

Every year we organise the most enormous

party for children suffering from leukaemia.

Some bring brothers and sisters. And to make

sure it really is an enormous party we invite

thousands of other disadvantaged children as

well.

This year’s party was no exception. Held in

London’s Battersea Park, we welcomed around

6,000 children. Chart-topping singer Jamelia

entertained and enthralled the children – as did

the many other stars and attractions including

fairground rides, clowns and costume

characters, bouncy castles and many other

entertainments, all laid on free of charge.

As always we relied on our huge team of

volunteers to make the day run smoothly.

Around 800 individuals donated their time and

talent to give the children a truly memorable

day out. And many companies donated the

products we need to throw such a grand party –

including food, drink, goodies and prizes.


Raising awarenessThe 17th Amazing Great Children’s Party

20

over 2,600 miles

SydneyPerth

CHILDREN with LEUKAEMIA. Healso gained worldwide mediacoverage, drawing publicattention to the problem ofchildhood leukaemia. Trackingshowed that the seriousmessages behind Lloyd’sheadline-grabbing antics arehitting home. People whorecalled receiving informationabout Lloyd’s challenge were 75per cent more likely than thegeneral population to nameleukaemia as the UK’s biggestchild-killer disease.

Once again, more than 100,000children took part in our annualMr Men and Little MissChildren’s Marathon Challenge.Altogether they raised almost£2 million for their schools,guide units, scout sections,clubs, groups and CHILDRENwith LEUKAEMIA. That’saround £20 per child – aphenomenal achievement.

Each child took on a personalchallenge relating to thenumber 26 – the number ofmiles in a marathon. There areover 100,000 tales ofinnovation, excellence andachievement to tell. We havepicked just one to tell you here,from Sarah, a member of the1st Great Chart and SingletonGuide Unit, who herself hassurvived leukaemia. Herchallenge was to write a 26 linepoem.

For many years we have beenfortunate to benefit from thegenerous support of theHargreaves family who havegiven us free use of the Mr Menand Little Miss Characters. Weare enormously grateful toChorion plc who have now madeCHILDREN with LEUKAEMIA theOfficial Charity of the Mr Menand Little Miss Characters,enabling us to continue to usethese wonderful images free ofcharge.

is for Time to make a difference.is for Help to raise money for charity.is for Enthusiasm goes a long way.

is for Cherished memories.is for Happiness helps in the bad times.is for Involve as many people as possible.says LEUKAEMIA MUST GO.is for Dreams of today, are realities of the future.is for Research has made a big difference to survival rates.is to Enjoy the time you have.is to Never stop hoping.

is to Stay focused.

is to Make every penny count.is to Accept any offers of help.is to Raise as much money as possible.is for All children are precious.is to say THANK YOU GREAT ORMOND STREET, without you I would not be here today.is to Highlight the successes.is to Organise more fund raising.is for No donation is ever too small.

is for Chemotherapy worked for me.is for Helping others, helps you feel good too.

is for Acute Lymphoblastic Leukaemia.

is to Enjoy being alive.is to Never give in to any illness.is for Great things lay ahead in life.is to Experience everything you can.

]


Where does the money come from?The Third Children’s Marathon Challenge

22

We have had another successfulyear in fundraising terms and thework described over theprevious pages was only madepossible by the generosity andhard work of the thousands ofpeople who contributed to thisfundraising success.

We are so fortunate to benefitfrom the effort and imaginationof these supporters who, as wellas donating their own money,organise all manner of weird andwonderful fundraising events,sell our raffle tickets and takepart in sponsored events suchas the Flora London Marathon.Our supporters never fail toamaze us with the lengths towhich they will go to raise funds.We are profoundly grateful toeach and every one of them.

Our legacy income grew six-foldthis year – to almost £600,000 –

and we are forever grateful to allthose who rememberedCHILDREN with LEUKAEMIA intheir will.

Running events

In 2004 more than 2,200 peoplechose to support CHILDRENwith LEUKAEMIA by taking partin runs and walks both at homeand abroad. Many of our runnershave personal reasons for takingpart in these events. Many tell ushow they have lost loved ones toleukaemia. Others have foughtleukaemia themselves. This goesa long way towards explainingthe remarkable dedicationshown by runners, not only inreaching the finish line but inraising astonishing sums ofmoney in the process.

A team of 1,100 runnersrepresented CHILDREN with

LEUKAEMIA in the 2004 FloraLondon Marathon. Distinctive intheir Mr Men and Little Missrunning vests, the team attracteda great deal of media attention -Tim Rogers as “Mr Bump” madethe front page of The Times.Between them the team ran28,820 miles on the day. To putthis in perspective, if they hadstarted off in relay fromGreenwich, they could have runto the finish line in The Mall viaSydney, Australia!

The outcome of this incrediblefeat was a staggering £1.6million to support our researchinto childhood leukaemia. Thisis equivalent to almost £1 perinch of the 26.2 mile route!

Tim Rogers, running forCHILDREN with LEUKAEMIAdressed as Mr Bump, made thefront page of The Times!


Where does the money come from?

24

Special events

Over the 17 years since we

began, a well-established social

calendar has evolved. The key

events making up this calendar

have achieved success thanks

to the imagination and hard work

of a number of dedicated

individuals and committees.

In February, our great friend and

supporter Caroline Randerson

kicked off the fundraising year

with her annual Spring into

Summer Ball. Sandown Park

Racecourse was the venue for

what was Caroline’s most

successful Ball yet, raising more

than £50,000 towards our work.

Jeremy Beadle’s Quiz Party in

March proved yet again to be a

huge success, also enjoying a

record-breaking year in

fundraising terms. Celebrity

teams pitted their wits against

teams of supporters in a crazy

night of cerebral nonsense,

raising close to £150,000 to help

children with leukaemia.

Over two nights in June, Diva

Opera performed Donizetti’s

Lucia de Lammermoor and

Mozart’s Die Entführung aus

dem Serail in the Great

Conservatory at Syon. Guests all

enjoyed a fabulous evening in

grand surroundings, raising

nearly £90,000 in the process.

Elizabeth, Duchess of

Northumberland kindly

continues as Patron of this

successful event.

Our annual Captains’ Cup in

September was another

successful event, with Golf Club

Captains, who have been raising

funds for CHILDREN with

LEUKAEMIA during their year in

office, joining Sandy Lyle and a

host of celebrities to play the

prestigious West Course at

Wentworth. Each team

comprised three Captains and

one celebrity and despite a short,

sharp downpour of rain, a

magnificent day’s golf raised

almost £60,000 towards our work.

The Paul O’Gorman Banquet and

Ball is our longest running,

annual event. First held in 1987,

only months after Paul died,

Paul’s sister Jean insisted on

attending even though she was

critically ill and was to die only

two days later. Today the Ball

holds a special place not only in

the hearts of the O’Gorman

family but the hundreds of

people who return every year.

The 18th Ball, hosted at

London’s Grosvenor House in

November, featured Abba tribute

band, Björn Again, as the star

attraction. More than 1,000

guests enjoyed excellent food,

top class entertainment and

plenty of fun and games. And

most importantly, the evening

raised over £250,000 towards

our work.


Where does the money come from?

Appeals

Our appeals have a dual aim.Not only are they intended toraise vital funds to support ourprogramme of work, they alsohelp us get across keymessages about childhoodleukaemia. We are fortunate tobenefit from a great deal ofcelebrity support in getting thesemessages out.

Hollywood actress BrendaBlethyn, a long-time supporter ofour work, led our spring appealto raise funds for the MRD trialscoordinated from the PaulO’Gorman Building at BristolRoyal Hospital for Children (seep14). Her appeal raised afantastic £456,185 towards thisvital project. Brenda also joinedthe Mr Men and Little Miss teamto run the Flora LondonMarathon on our behalf for thethird year running.

Sir Michael Caine and JeremyBeadle headed up our twosummer appeals, raising a

combined total of £1.4 million, atremendous contributiontowards our work.

Our autumn appeal was pennedby fundraiser extraordinaire,Lloyd Scott, seekingsponsorship for his pennyfarthing challenge described onpage 21. His record-breakingachievement captured theimagination of people from allover the world who sponsoredLloyd to the tune of £322,262.

And our annual Christmas GrandDraw was headed by TVpersonalities Ant and Dec(Anthony McPartlin and DeclanDonnelly), taking our Christmasappeal income for 2004 to morethan £2 million.

We continue to track the impactof these mailings and analysisshowed that people whorecalled receiving informationfrom Ant and Dec, for example,were more than twice as likely tobe aware thatleukaemia is theUK’s biggestchild killerdisease.

Trustees’ policies and responsibilities

Organisational structure andapproach

During 2004, under the terms ofthe Trust Deed (dated 4 January1988) and Variation of Trust Deed(dated 10 December 2003), thetrustees retained all powers todetermine how the charityoperated except the power tochange the Charity’s objectswhich required CharityCommission agreement.Trustees were responsible for allstrategic decisions which wereimplemented by the ChiefExecutive.

Following the transfer of theassets and undertakings of thecharity on 1 January 2005 to acompany limited by guarantee,the new company is governedby its Memorandum and Articlesdated 11 November 2003 asamended by special resolutiondated 30 November 2004. Underthese Articles, trustees areappointed by a majority vote ofthe members (who are all thecurrent trustees) by ordinaryresolution.

It is the trustees’ policy to workwith other relevant charities andduring the course of 2004, thecharity worked closely with theLeukaemia Research Fund, theGreat Ormond Street HospitalChildren’s Charity and the VenikTrust.

Risk assessment

The trustees keep under regularreview the major risks that couldaffect the achievement of thecharity’s objectives. During theyear, a risk assessment wascarried out by the charity’s newinternal auditors, Sayer Vincent.In 2005, it is intended for Sayer

Vincent to focus on risk areas toreview the internal controls inplace and recommend anyimprovements to controls andmethods to mitigate exposure tothe risks.

Reserves and investmentpolicies

The charity has very low fixedcosts, with payroll costs forexample less than 4% of thetotal expenditure, and thereforethere is little need of largereserves. Furthermore, the fixedasset base is now at zero afterthe grant of the Green Hedgesproperty in the year. Thetrustees feel it is sufficient tomaintain an unrestricted reserveof no more than three months ofthe annual expenditure and haveadopted this as their policy.Free reserves at 31 December2004 amounted to £2.0m (2003:£1.7m), which represents eightweeks of the annual expenditurein 2004 and therefore meets thepolicy requirement. In order tofacilitate the disbursement ofthese reserves, the trusteescontinue to think it prudent tokeep the entire fund on shortterm deposit.

Statement of trustees’ responsibilities for thefinancial statements

Charity law requires the trusteesto prepare financial statementsfor each financial year whichgive a true and fair view of thecharity’s incoming resources andapplication of resources duringthe year and of its state of affairsat the end of the year. Inpreparing those financialstatements the trustees arerequired to:

• select suitable accountingpolicies and then apply themconsistently;

• make judgements andestimates that are reasonableand prudent;

• state whether applicableaccounting standards andstatements of recommendedpractice have been followed,subject to any materialdepartures disclosed andexplained in the financialstatements; and

• prepare the financialstatements on the goingconcern basis unless it isinappropriate to presume thatthe charity will continue inoperation.

The trustees are responsible forkeeping proper records whichdisclose with reasonableaccuracy the financial position ofthe charity and enable them toensure that the financialstatements comply with theCharities Act 1993. They arealso responsible forsafeguarding the charity’s assetsand hence taking reasonablesteps for the prevention anddetection of fraud and breachesof law and regulations.

Eddie O’GormanChairman of Trustees

23rd March 2005

26

Chris Tarrant’s phenomenal2003 Christmas appeal sawfunds continuing to accrueuntil well after Easter 2004.

STATEMENT OF FINANCIAL ACTIVITIES FOR THE YEAR ENDED 31 DECEMBER 2004

Total Totalrestricted unrestricted Total Total

funds funds 2004 2003Note £ £ £ £

Incoming resourcesDonations, appeals and fundraising activities

Spring appeals - 456,185 456,185 149,657Summer appeals - 1,407,284 1,407,284 830,556Autumn appeals - 322,262 322,262 -Christmas appeals - 2,010,473 2,010,473 3,410,511Standing orders - 466,152 466,152 284,684Children’s Marathon Challenge - 1,218,967 1,218,967 1,379,961London Marathon and other running events - 1,862,539 1,862,539 1,730,587General donations and fundraising 87,775 1,012,302 1,100,077 963,438Special events - 565,994 565,994 474,770

87,775 9,322,158 9,409,933 9,224,164Other incoming resources 2 - 2,300,000 2,300,000 305,295Legacies - 595,504 595,504 98,038Investment income - 110,205 110,205 66,444

Total incoming resources 87,775 12,327,867 12,415,642 9,693,941

Less: Cost of generating funds 3Fundraising costs - 1,640,327 1,640,327 1,273,760Publicity costs - 215,471 215,471 179,100

Net incoming resources available forcharitable application 87,775 10,472,069 10,559,844 8,241,081

Charitable expenditureCost of activities in furtherance of the objects of the charity:Grants to third parties 14

Relief of children’s suffering 12,000 2,723,664 2,735,664 1,013,429Research into causes 3,500 1,739,532 1,743,032 148,123Research into treatment 66,275 1,911,086 1,977,361 2,660,618

81,775 6,374,282 6,456,057 3,822,170Campaigns, projects and programmes 3, 15

Relief of children’s suffering 6,000 2,605,366 2,611,366 2,354,027Research into causes - 1,021,970 1,021,970 995,906Research into treatment - 733,315 733,315 1,009,283

6,000 4,360,651 4,366,651 4,359,216

Management and administration 3 - 54,252 54,252 40,591

Total charitable expenditure 87,775 10,789,185 10,876,960 8,221,977

Total resources expended 87,775 12,644,983 12,732,758 9,674,837

Net (resources expended)/incoming resources before revaluation - (317,116) (317,116) 19,104

Other recognised gains and lossesGain on revaluation of freehold property 6 - 343,076 343,076 -

Net movement in funds - 25,960 25,960 19,104

Fund balance at start of the year - 1,989,639 1,989,639 1,970,535

Fund balance at end of the year - 2,015,599 2,015,599 1,989,639======== ======== ======== ========

All recognised gains and losses have been included in the Statement of Financial Activities and the amounts included are derivedentirely from the continuing activities of the charity.

Some of the comparatives have been reclassified to conform to the figures in the current year. This includeda movement from donations, appeals and fundraising activities to other incoming resources.

The notes on pages 32 to 35 form part of these financial statements.


Statement of financial activitiesIndependent auditor’s report

We have audited the financialstatements of CHILDREN withLEUKAEMIA on pages 29 to 35for the year ended 31 December2004 which comprise thestatement of financial activities,the balance sheet, the cash flowstatements and related notes.These financial statements havebeen prepared under thehistorical cost convention, asmodified by the revaluation offreehold properties.

This report is made solely to thecharity's trustees, as a body, inaccordance with Section 44 of theCharities Act 1993. Our audit workhas been undertaken so that wemight state to the charity'strustees those matters we arerequired to state to them in anauditor's report and for no otherpurpose. To the fullest extentpermitted by law, we do notaccept or assume responsibilityto anyone other than the charity'strustees as a body, for our auditwork, for this report, or for theopinions we have formed.

Respective responsibilities oftrustees and auditors

The trustees' responsibilities forpreparing the annual report andthe financial statements inaccordance with applicable lawand United Kingdom AccountingStandards are set out in theStatements of trustees'responsibilities.

We have been appointed asauditors under Section 43 of theCharities Act 1993 and report inaccordance with regulationsmade under Section 44 of that

Act. Our responsibility is to auditthe financial statements inaccordance with relevant legaland regulatory requirements andUnited Kingdom AuditingStandards.

We report to you our opinion as towhether the financial statementsgive a true and fair view and areproperly prepared in accordancewith the Charities Act 1993. Wealso report to you, if in ouropinion, the Trustees' AnnualReport is not consistent with thefinancial statements, if the charityhas not kept proper accountingrecords or if we have not receivedall the information andexplanations we require for audit.

We read the other informationcontained in the Report andAccounts of the trustees andconsider whether it is consistentwith the audited financialstatements. We consider theimplications for our report if webecome aware of any apparentmisstatements or materialinconsistencies with the financialstatements. Our responsibilitiesdo not extend to otherinformation.

Basis of opinion

We conducted our audit inaccordance with United KingdomAuditing Standards issued by theAuditing Practices Board. Anaudit includes examination, on atest basis, of evidence relevant tothe amounts and disclosures inthe financial statements. It alsoincludes an assessment of thesignificant estimates andjudgements made by the trustees

in the preparation of the financialstatements, and of whether theaccounting policies areappropriate to the charity'scircumstances, consistentlyapplied and adequatelydisclosed.

We planned and performed ouraudit so as to obtain all theinformation and explanationswhich we considered necessaryin order to provide us withsufficient evidence to givereasonable assurance that thefinancial statements are free frommaterial misstatement, whethercaused by fraud or otherirregularity or error. In forming ouropinion we also evaluated theoverall adequacy of thepresentation of information in thefinancial statements.

Opinion

In our opinion the financialstatements give a true and fairview of the state of the charity'saffairs as at 31 December 2004and of its incoming resources andapplication of resources in theyear then ended and have beenproperly prepared in accordancewith the Charities Act 1993.

UHY Hacker YoungRegistered AuditorChartered Accountants

St. Alphage House2 Fore StreetLondon EC2Y 5DH

23rd March 2005

28


Financial activities 2004Balance sheet

30

BALANCE SHEET AS AT 31 DECEMBER 20042004 2003

Note £ £ £ £Fixed assetsTangible assets 6 - 967,294Investment in subsidiary 4 100 100

Current assetsDebtors 7 442,357 551,984Cash at bank and in hand 4,280,704 1,218,132

________ ________4,723,061 1,770,116

Creditors: amounts falling due within one year 8 (1,072,591) (747,871)

________ ________Net current assets 3,650,470 1,022,245

________ ________Total assets less current liabilities 3,650,570 1,989,639

Creditors: amounts falling due after more than one year 9 (1,634,971) -

________ ________Net assets 2,015,599 1,989,639

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

Represented by:

Unrestricted funds 10 2,015,599 1,989,639======= =======

The notes on pages 32 to 35 form part of the financial statements.

Approved and signed on behalf of the Trustees on 23rd March 2005

The Earl CadoganTrustee

Eddie O’GormanTrustee

Resources generated

How theresources wereused

Standingorders 4%

Legacies 5%

Investments, gains & other

33%14%

22%

Publicity 2%

42%

22%

21%

<0.5%Managementandadministration

13%

IndividualAppeals

LondonMarathon &other runningevents

Children’sMarathonChallenge10%

Generaldonations andfundraising8%

Specialevents 4%

Relief ofchildren’ssuffering

Researchinto causes

Research intotreatment

Fundraising


Cash flow statement and Notes to the financial statements

CASH FLOW STATEMENT FOR THE YEAR ENDED 31 DECEMBER 2004Note 2004 2003

£ £Net cash inflow from operating activities a) 2,952,367 239,563

Interest received 110,205 66,444

Increase in cash in the period b) 3,062,572 306,007======= =======

Notes to the Cash flow Statement

a) Reconciliation of changes in resources 2004 2003to net cash inflow from operating activities £ £Net (resources expended)/incoming resources before revaluation (317,116) 19,104

Depreciation - 23,842Investment income (110,205) (66,444)Changes in debtors 109,627 (176,862)Changes in creditors 1,959,690 745,218Grant of tangible fixed assets 1,310,371 -Gift in kind received - (305,295)

2,952,367 239,563======= =======

b) Analysis of net funds1 January Cashflow 31 December

2004 £ £ 2004 £

Cash at bank and in hand 1,218,132 3,062,572 4,280,704======= ======= =======

32

1. Accounting policies(a) Accounting conventionsThe financial statements are prepared in accordance with applicable accountingstandards, the Charities (Accounts and Reports) Regulations 2000 and the relatedStatement of Recommended Practice for Accounting and Reporting by Charities(SORP) published in October 2000 in all material respects and are prepared underthe historical cost convention, as modified by the revaluation of freeholdproperties. The charity owns the whole of the share capital of Helping Children with LeukaemiaLimited, a company registered in England. The company was dormant throughoutthe current and previous years. In the opinion of the trustees, the company is notmaterial in the context of the overall accounts and therefore, the consolidatedfinancial statements have not been prepared. The particular accounting policies adopted by the trustees are described below:

(b) 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

(c) 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.

(d) Resources expended and basis of allocation of costsGrants to third parties are included in the Statement of Financial Activities when

approved by the trustees and agreed with the other organisations. Payment ismade when the conditions of the grant have been met.Expenditure on campaigns, projects and programmes is included when incurred.The majority of the costs are directly attributable to specific activities. Otherindirect costs are apportioned to activities in accordance with staff activity and anassessment of where the resources have been applied.

(e) Fundraising costsThese 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.

(f) Publicity costsThese are costs incurred in promoting the charity’s aim, objectives and fundraising.In part, they support the charitable activities but cannot be precisely allocated tospecific programmes.

(g) Management and administration costsThis represents costs incurred to manage the charity in compliance withconstitutional and statutory requirements.

(h) Fund accountingUnrestricted funds are available for use at the discretion of the trustees infurtherance of the general objectives of the charity and have not been designatedfor 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 are chargedagainst the specific fund.

(i) TaxationCHILDREN with LEUKAEMIA is a registered charity whose income is not subject toincome tax.

2. Other incoming resources 2004 2003£ £

Repayment of Lifeline Building grant 2,300,000 -Gift in kind - work performed on Agincourt Road property - 305,295________ ________

2,300,000 305,295======= =======

During the years 1998 to 2002, £1.95m was granted to the University of Bristol inorder to build the Paul O'Gorman Lifeline Building. Owing to reorganisation at the

university, it was no longer able to use the building entirely within the charity'sobjects. Therefore the university refunded the original grant of £1.95m plus £0.35mas an allowance against the part not used in furtherance of the charity's objects tothat date. With this payment, the university fully discharged its obligations to thecharity under the terms of the original grant. However the building will remainnamed the Paul O'Gorman Building and the university will use its reasonableendeavours to locate work within the charity's objects in that building in the future.

3. Total costs Promotion ofRelief of research research

Fundraising Publicity children into into Management &Costs Costs suffering causes treatment Administration Total Total

Note 2004 2004 2004 2004 2004 2004 2004 2003£ £ £ £ £ £ £ £

Staff costs 12 104,339 18,926 188,405 122,052 45,780 - 479,502 379,428Direct campaign costs - - 2,422,961 899,918 687,535 - 4,010,414 3,979,788Printing, postage & stationery 899,025 - - - - - 899,025 722,144Function and venue costs 628,793 196,545 - - - - 825,338 722,662Other expenditure 8,170 - - - - - 8,170 8,054Audit fee - - - - - 19,750 19,750 7,500Other office costs - - - - - 34,502 34,502 33,091________ ________ ________ ________ ________ ________ ________ ________

1,640,327 215,471 2,611,366 1,021,970 733,315 54,252 6,276,701 5,852,667======= ======= ======= ======= ======= ======= ======= =======

NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2004

4. Investment in subsidiaryCHILDREN 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 (2003: £100).The company did not trade during the year.

5. Trustees' emolumentsThe trustees or any persons connected with them neither received nor waived anyemoluments during the year. The trustees do not hold indemnity insurance.

6. Tangible fixed assets Freehold Fixtures &properties fittings Total

£ £ £CostAt 1 January 2004 1,048,441 130,174 1,178,615Revaluation 343,076 - 343,076Disposals (1,391,517) (130,174) (1,521,691)________ ________ ________At 31 December 2004 - - -________ ________ ________DepreciationAt 1 January 2004 169,774 41,547 211,321Disposals (169,774) (41,547) (211,321)________ ________ ________At 31 December 2004 - - -________ ________ ________Net book valuesAt 31 December 2004 - - -======= ======= =======At 31 December 2003 878,667 88,627 967,294

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

Paul O’Gorman House, Agincourt Road was transferred to the Royal Free Hospitalduring the year (net book value £710,370 including fixtures & fittings).

The remaining property, the Paul O’Gorman Respite Centre (Green Hedges), wasexternally valued by Holland Alexander & Co Limited on the basis of open marketvalue as defined by the Appraisal and Valuation Manual issued by the RoyalInstitution of Chartered Surveyors. The open market value of this property was£600,000. The net book value of this property (including associated fixtures &fittings) was £256,924. This property, along with associated fixtures and fittings,was subsequently granted to Venik Trust.

7. Debtors 2004 2003£ £

Trade debtors 53,270 -Other debtors 115,592 551,984Accrued income 273,495 -________ ________

442,357 551,984======= =======

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

8. Creditors: amounts falling due within one year 2004 2003£ £

Trade creditors 637 -Sundry creditors - 745,371Taxes and social security 28,357 -Grants payable 1,032,597 -Accruals 11,000 2,500________ ________

1,072,591 747,871======= =======

9. Creditors: amounts falling due after more than one year2004 2003

£ £Grants payable 1,634,971 -

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

10. Statement of fundsAt At

1 January Recognised 31 Dec2004 Income Expenditure gains 2004

£ £ £ £ £

Unrestricted funds 1,989,639 12,327,867 12,644,983 343,076 2,015,599Restricted funds - 87,775 87,775 - -________ _________ _________ ________ ________

Total funds 1,989,639 12,415,642 12,732,758 343,073 2,015,599======= ======== ======== ======= =======

The restricted funds comprised donations given from Trust Funds to be spent onspecific projects and these funds were all discharged during 2004, £81,775 ongrants to third parties and £6,000 on campaigns, projects and programmes.

11. Analysis of net assets by fundsTotal Total

Unrestricted Restricted funds fundsfunds funds 2004 2003

£ £ £ £Fixed assets 100 - 100 967,394Net current assets 3,650,470 - 3,650,470 1,022,245Creditors: more than one year (1,634,971) - (1,634,971) -________ ________ ________ ________

2,015,599 - 2,015,599 1,989,639======= ======= ======= =======

12. Staff costs 2004 2003£ £

Salaries and wages 433,180 340,049National Insurance 46,322 39,379________ ________

479,502 379,428======= =======

One employee earned between £100,000 and £110,000 during the year.

The average weekly number of employees during the year, as calculated on a fulltime equivalent basis, was as follows:

Number of employees2004 2003

14 11======= =======

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

13. Capital commitments

There were no capital commitments at 31 December 2004 (2003: Nil).

Reg

iste

red

Cha

rity

No.

298

405.

Ina

ugur

ated

in 1

988

by D

iana

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nces

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es in

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ory

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ean

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orm

anC

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ief

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ota

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rants

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hir

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art

ies

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fess

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34 35

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