Report and Financial Statements 30.10.19 - Cure EB...Alain Hovnanian, Dr Matthias Titeux, Dr Anna Martinez and Dr Anastasia Petrova. In November we hosted a very successful speaker

Report and Financial statements Period Ended 31 December 2018 Charity Number 1158672

Cure EB formerly known as Sohana Research Fund

CUREEB(Charitynumber1158672) ReportandFinancialStatementsfortheperiodended31December2018

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Contents

Page 2. Legalandadministrativeinformation 3. Summary5. Founder’sStatement6. ReportoftheTrustees 16. Reportoftheindependentauditors 18. Statementoffinancialactivities 19. Balancesheet 20. CashFlowstatement 21-22. Notesformingpartofthefinancialstatements


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Legal and Administrative Information

1. Thestructuralandadministrativedetailsforthecharityareasfollows:

1.1. Name:CureEB(formerlyknownasSohanaResearchFund)

1.2. Typeofentity:CharitableIncorporatedOrganisation

1.3. Dateofincorporation:25September2014

1.4. RegisteredCharityNumber:1158672

1.5. Governingdocument:Constitution

1.6. Registeredandprincipaloffice:10HuntingdonStreet,London,N11BU

2. Thetrusteesasatthedateofthisreport(the“Trustees”)are:

2.1. Ms.SharmilaNikapota

2.2. Mr.JamesCollins

2.3. Mr.MichaeldeLathauwer

2.4. Ms.TazimHall

2.5. Prof.DavidKelsell

2.6. Mr.DuncanWales

3. TheBankersare BarclaysBankPLC

14UpperStreetIslingtonLondonN10PQ

4. TheAuditorsare HainesWatts(City)LLP

NewDerwentHouse,69-73TheobaldsRoad,LondonWC1X8TA


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Summary

Our Mission Statement OurmissionistofindeffectivetreatmentsandultimatelyacureforEpidermolysisBullosa(“EB”).

Our Commitments TofundtranslationalresearchandclinicaltrialsforthebenefitofpeoplewithEB.

Tomaximiseresearchspend.

ToraiseawarenessofEB.


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2018 Highlights 10 Downing Street Reception

Launching‘CureEB’attheHouseofLordswitharesearchupdatehostedbyLordRedesdale.SpeakersincludedCureEBPatronDamianLewis.

Fundraising Highlights • VirginLondonMarathonraisedover£18,500• CharityoftheyearforREDBURNpartners2018£8500• DodingtonOpera£75,000• PhoebeResearchFund£90,000• GoldmanSachsGivesDonationstotalling£210,000• BigGivemorethan£80,000• GFICharityDaydonation£50,000• PrudentialRideLondon£9,800

Project Highlights • LenticolFTrialendedinMarch2018• ADSTEMtrialended• GeneeditingprojectcontinuingatUCL,InstituteofChildHealth• LenticolMprojectcontinuing• CommittedtofundtheEBGrafttrial• LimbalstemcellprojectandNextGenerationGenomesequencingprojectsongoing

inMinnesota• EBiPSConsortiumcontinuinginStanford,ColumbiaandColorado


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Founder’s Statement

Epidermolysis Bullosa (“EB”) is a group of genetic skin blistering conditions that vary inseverity depending on the subtype. Some forms are fatal in infancy and others lead toprogressive deformity and are severely life limiting. Recessive Dystrophic EpidermolysisBullosa (“RDEB”) is a very severe form that leads to scarring, contractures, oesophagealrestriction,cornealabrasions,malignantskincancerandmanymorepainfulandlife-alteringsymptoms.

Cure EB exists to find treatments and a cure for EB. To this end,we fund predominantlytranslationalmedicalresearchaimingtodeliverquality-of-lifechangingreliefandeventuallyacuretothoseafflictedbyEB.

In 2018 we raised £774,576 This allowed us to continue to make significant researchcommitments.

We changed our name to Cure EB to help engage followerswith ourmission and held a‘launch’andresearchupdatemeetingattheHouseofLordsinMay

Researchprogresshasbeenverygood.Twotrials(LenticolFandADSTEM)ended.Weawaitanalysisoftheresults.OurprojectsinMinnesotainvolvinggeneeditinglimbalstemcellsandregeneratingthecornealsurfaceinRDEBpatientsentereditsfinalyearoffunding.Thenextgeneration genome sequencing project being funded in Minnesota and the EB iPSConsortium funded in collaborationwith twoUSgroupshavehit theirmilestonesandareprogressingwell.IntheUKthegeneeditingprojectatUCLisongoing.WealsocommittedtofundaveryexcitingtrialcalledEBGraft inFrance.WehavecreatedabankofMSCcellsatKings College Londonbut have beenunable to deliver these to children as theNIHRmayhelpexpandthistoallcentresintheUKandweareawaitingtheirdecision.

Raising awareness is an important part of our mission. We continued our social mediaawareness campaign called “EBpop” – “Play #EBpop to make the blisters stop”, whichinvolves poppingwater-balloons, the idea being that they are like fluid filled blisters thatsuffererswithEBneedtohavepoppedwithaneedle.Wecreatedafunrun‘ButterflyRunLondon’attheOlympicParkandbroughttheEBcommunitytogetherafterwardsataCureEB Family Day to listen to Professor Alain Hovnanian, Dr Matthias Titeux and Dr AnnaMartinezandDrAnastasiaPetrova.AttheendoftheyearwehadaButterflyBrunchClubspeaker lunch at the Sackler Gallery titled ‘Mishal Husain in conversation with HadleyFreeman’whichraisedsignificantfundstowardsourBigGiveChristmasChallenge.

Inthemeantime,wehopethatyouwillfindthisTrustees’Reportinformative.

SharmilaNikapota

FounderTrustee


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Report of the Trustees

TheTrusteespresenttheirreportalongwiththefinancialstatementsofthecharityfortheperiodended31December2018

A. Introduction

1. CureEB–thenknownastheSohanaResearchFundC.I.O.(“SRF”)–wasestablishedon25September2014withRegisteredCharityNumber1158672.

2. Cure EB’s principal purpose is to fund medical research and clinical trials aimed atdiscovering,developinganddeliveringtreatmentsforEpidermolysisBullosa(“EB”).

3. Keyinformationfor2018isasfollows:

3.1. FUNDRAISING–CureEBraisedmorethan£770,000in2018.

3.2. RESEARCHFUNDING–Ourresearchspendandcommitmentin2018wasmorethan£1,000,000.

3.3. RESEARCH COMMITMENTS – We have committed to fund an exciting newproject called EB Graft, which involves patient derived gene corrected skinequivalentgrafts.WehavealsocontinuedourcollaborationwithtwoUSbasedfunding organisations to fund two large projects in the US inwhichwe takeequalshareoveranumberofyearsprovidedmilestonesaremet. IntheU.K.,CureEBcommittedtofundingMSCproductionatKings,wherecellshavebeenbanked to treatRDEBpatients in theUK. Further funding is onholduntilweknowiftheprojectwillbroadenintoaclinicalstudy.AgeneeditingprojectatUCLisinitssecondyear,asistheeyeprojectinMinnesota.

3.4. RESEARCHRESULTS–TheADSTEMandLENTICOLF trials completed.Analysisandwriteupwasstarted.Theeyeprojectisinitssecondyearoffundingwithgoodprogress.LenticolMproducedinterestingresultsandisbeingwrittenupforpublication.ThegeneeditingprojectatUCLisgeneratinggooddataandiskeepingtoitstimelines.

3.5. AWARENESSANDOTHEREVENTS–WeheldaresearchupdatemeetingattheHouseof Lords. In the summerweplayed ‘EBpop tomake theblisters stop’andheldaButterflyBrunchClubSpeakerlunchattheSacklerGallery.

3.6. Lookingahead,in2019willagainhaveourmainfundraisingevent:ourbiennialSilverButterflyDinner.Consequently,weexpectboth incomeand fundraisingexpendituretobehigher.


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3.7. Welookforwardtoidentifying,committingtoandfundingfurtherprojectsand,indoingso,cementingCureEB’spositionasoneoftheleadingfundersofRDEBresearchandtrials.

B. Objectives and Activities 4. Assetout inCureEB’sConstitution,CureEB’sobjectsare “Forthepublicbenefit, (a)

theadvancementofhealthand(b)thereliefandassistanceofpeopleinneedwhoaresufferingfromEpidermolysisBullosa,inparticularbutnotexclusivelybymakinggrants:

(1) to fund medical research and/or clinical trials anywhere in the world for thepurpose of discovering, developing and delivering treatments for EpidermolysisBullosa;and

(2) tofundthetreatmentofpatientswhoaresufferingfromEpidermolysisBullosa”.

5. CureEB’sobjectivesduring2018werelimitedto:

5.1. Raisingfunds(includingraisingawarenessofEBandCureEBinordertoassistwithfundraising);

5.2. Identifyinganddevelopingprojectsforfunding;and

5.3. Fundingofprojects.

6. TheTrusteesconfirmthatindeterminingwhatactivitiesCureEBcarriesout,theyhavehadregardtotheCharityCommission’sguidanceonpublicbenefit.

B(1). Fundraising and Awareness

7. As a rare genetic skin condition public knowledge of the condition is limited. ThisimpactsCureEB’sability toraisemoneyfor researchandsupport.Consequently,weseeincreasedawarenessoftheconditionassomethingthathasadirectinfluenceonourabilitytoraisefunds.

8. We had a number of articles in local press (Rutland and Stanford Mercury andPeterborough Today) regarding donations. A press release re a global collaborationgeneratedsignificantinterest.ASunarticlereferencedCureEBinanarticle‘HelpourPoppy’ and therewas a piece in ScienceDaily. Sohanawas featured in ‘Me andmyButterflySkin’forBBC3whichhasnowbeenwatchedbyalmost2millionpeople.


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9. CureEBhasanactivesocialmediapresencewithover32,000followersonFacebookandover2400on twitter.Wearegraduallybuildingour Instagramfollowernetworkwithover1200followers.TheCureEBwebsitehasalsobeenanimportanttoolwhenfundraising and educating the public as to our aims and ambitions. It holds allinformationregardingprojectsandpressaswellaseventinformation.

10. Our community outreach and awareness events included a charity reception atDowningStreet.Weheldamajordonor scientificupdateandCureEB launchat theHouseofLords,hostedbyLordRedesdaleandattendedbyPatronDamianLewis..WeorganisedourfirstfunrunattheOlympicPark,calledtheButterflyRun.OnthesamedayweheldEBFamilyDay,withlunch,gamesandascientificupdatefromProfessorAlainHovnanian,DrMatthiasTiteux,DrAnnaMartinezandDrAnastasiaPetrova. InNovember we hosted a very successful speaker lunch at the Sackler gallery whichbroughtinnewpeopleandsignificantfunds.

11. Coming into2018,wewerecharityoftheyearforRedburn. InSeptember,wewerechosen for GFI charity day. We benefitted from an Opera evening hosted by ourpatronsSir JamesandLadyDeirdreDyson.Substantialamountswere raised throughcelebrations,communityledeventssuchascakesales,golfdaysandschooldonations.Donations throughGoldman Sachs Gives and the Big Givewere very significant thisyear.

12. SocialMediacontinuestobeanimportanttooltoraiseawarenessoftheconditionandcharity.Wecontinuedournewsocialmediacampaigncalled#EBpop–“Play#EBpoptomaketheblistersstop”whichinvolvespoppingballoonsandchallengingotherstodothesamewhichhelpedraiseawarenessanddonationsthoughwewouldliketogrowinvolvement.

13. Sponsorship events (which included a team running in the London Marathon, theVitality London run, the Royal Parks Half, and Prudential Ride London) were quitesuccessful, and helped raise awareness of the charity. We also benefited fromindividuals participating in and running their ownevents such as climbs, cycle rides,ButterflyBrunchClubbrunchesandcakesales.

14. Lookingahead,wehaveanumberofeventsplannedfor2019, includingourbiennialSilver Butterfly Dinner, Butterfly Run London, EB family Day and Butterfly Brunchevent. We are striving to build regular giving and online donations as well as textmessagegiving.

B(2). Projects15. Cure EB funds a range of projects. However, Cure EB’s principal focus is on

translational research – i.e. the preclinical research and clinical trials that will (wehope)translatefundamental(laboratorybased)researchintoeffectivetreatmentsforRDEB. We are assisted by an experienced independent expert panel who evaluateprojectsandadviseonresearchstrategiesandpriorities.


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16. Wecurrentlyevaluateprojectsonarollingbasis(ratherthaninformalfundingroundsatfixedintervals)andinviteapplicationsthatmeetourpriorityareasofresearch.Aninitialoutlineoftheprojectisevaluatedandifdeemedtobewithinanareaofinterestafullgrantapplicationisaskedfor.Theprojectisthenexternallyreviewedandscored.Ifthescoresaresufficientlyhightheprojectispresentedtothetrusteesforapproval.If approved, Cure EB negotiates and concludes formal funding agreementswith thebodythatistocarryouttheresearch.Weareopeningonefixedfundingroundalongwith keeping the door open to project evaluation during the year. This will easecollaborationwithotherorganisations.

17. During2018,wetookonaveryimportantprojectcalledEBgraftthatwasbuiltoutofabigEUfundedprojectcalledGenegraft.Ourflexibleapproachallowedustostepinandfund this important trial for skin equivalent skin grafts which have the potential tochange the quality of life for people with RDEB. In addition we have increased ourportfolio of projects and have a good collaborative relationship with other fundingorganisationsinpursuitoftreatmentsforpeoplewithEB.

C. Achievements and Performance 18. During2018 the total researchspendwasmore than£1,000,000.Themain research

achievementswereasfollows:

18.1. ADSTEMTrial–Understandinghowallogeneicmesenchymalstromalcellsgivenintravenouslycanmodifydiseaseseverityinepidermolysisbullosapatients.Thetrialfinishedin2018

18.2. LenticolF–Lentiviral-mediatedCOL7A1gene-modifiedtherapyforRDEB.Thistrialfinishedin2018

18.3. Thelimbalstemcellprojectcompleted

18.4. EB iPS Consortium. Grants to Colorado and Stanford totalled more than£185,000.

18.5. NextgenerationgenomeeditingprojectMinnesota.CureEBgrantedmorethan£245,000in2018.

18.6. LenticolMworkpackage1(nearly£80,000in2018)completedwithinterestingresults,butwillnotbeprogressingtotheclinicaltrialphaseatthistime.

18.7. MSC’shavebeenproducedatKing’sCollegeLondon.However,thecellsarenotbeingusedfortreatmentpendinganNIHRdecisionaboutexpandingtheiruseintoastudyformorechildren.

18.8. UCLGeneEditing:morethan£40,000in2018.


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18.9. EBGraft. Cure EB committed to fundingofmore than£425,000 to Inserm inParisandFIBHNJinMadrid.Ofthissum,£63,000waspaidin2018.

19. Lookingahead,ouraimistocontinueourfocusontranslationalresearch–i.e.projectsaimedat“translating”fundamentalresearchintotreatmentsforpatients.Wewillalsocontinuelookingatemergingtechnologiestodeterminetranslationalbenefit.

20. TothisendweaimtocontinuetobuildourrelationshipswithotherpotentialfundersandinvestorsandwiththeRDEBresearchcommunity.

D. Financial Review

21. The accounts show the financial affairs of Cure EB for 2018 and as at 31December2018.Thekeyfigures,togetherwithcommentary,areasfollows:

21.1. GrossIncome:£774,576.Thisissomewhatlowerthantheamountraisedinthepriorperiodforthereasonsanticipatedatparagraph23ofour2017Report,inparticularnothostingofthebiennialSilverButterflyDinner(whichraisedabout£250,000in2017).Grossincomewasslightlyaheadofexpectation.

21.2. Costs of Fundraising: £18,581. This was substantially lower than the priorperiod as there were no expensive fundraising events (such as the SilverButterflyDinner).Asa ruleof thumb,CureEBaims to raise£10 forevery£1spentonfundraisingactivities.For2018thiswascomfortablyexceeded.

21.3. Expenditure on charitable activities: £1,143,529. This was higher than in thepriorperiod,largelyduetoamulti-yearcommitmenttoEBGraft.

21.4. Reserves: £1,578,542. This is down on the prior period as expenditureexceededincome(asplanned).Ofthissum:

(1) AssetoutintheFinancialStatements(1)£17,939isinrestrictedfunds;and(2)£1,470,055hasbeendesignatedasbeingavailable forexpenditureoncharitablepurposesonly(excludingadministration).

(2) The unrestricted and undesignated funds – which are used to cover thecostoffundraisingandadministration–arecurrentlymadeupentirelyofdonations by the Founders. As at 31 December 2018, these unrestrictedreservestotalled£90,548.

22. Lookingaheadto2019:

22.1. Gross income is likely to be higher as we will be hosting our biennial SilverButterflyDinner.

22.2. Costof fundraising is also likely tobe significantlyhigher. TheSilverButterflyDinnerisasignificantsourceofcost(aswellasincome).


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22.3. DuetotheaccrualoftheentirecostofEBGraftin2018projectspendwashigh.Weexpectexpenditureonprojectstobelowerin2019but,overthemediumterm,CureEBplanstomaintainexpenditureslightlyaboveincome(onaverage,ifnotineveryyear)inordertofurtherreducethecashreservesrecordedinthebalancesheet.

23. Thetrusteesasatthedateofthisreport(the“Trustees”)are:

23.1. Ms.SharmilaNikapota

23.2. Mr.JamesCollins

23.3. Mr.MichaeldeLathauwer

23.4. Ms.TazimHall

23.5. Prof.DavidKelsell

23.6. Mr.DuncanWales

24. Therewerenoothertrusteesduring2018.TheseTrusteesmaybereappointedattheexpiryoftheircurrenttermsand/orfurthertrusteesmaybeappointedbyresolutionpassedataproperlyconvenedmeetingofthetrustees.PursuanttothetermsoftheConstitution, the minimum number of trustees is 3 and the maximum is 9. TheTrusteesareselectedfortheirexperienceandexpertise.

25. TheTrusteesarenotandwerenotcompensatedforperformingtheirrolesastrustees.

26. ManagementandAdministration:

26.1. Management of Cure EB’s fundraising and awareness activities has beendelegated (subject toa financial cap) toSharmilaNikapotaand JamesCollins.TheyinturnreporttotheotherTrustees.Inparticular:

(1) Sharmila Nikapota has primary responsibility for conceiving, developingandperformingall fundraisingandawarenessactivities.This includes theidentification of suitable contractors to provide goods or services andnegotiationwiththosecontractors.

(2) Costsofgoodsandservicesareapprovedby,andpaymentforgoodsandservicesisarrangedby,JamesCollins.

(3) SharmilaNikapotaandJamesCollinsareauthorisedtojointlyincurcostsofupto£10,000permonthinrelationtofundraisingandawarenessactivitieswithout further authorisation from the Trustees. For major events,SharmilaNikapotaand JamesCollinsmust seek theprior approvalof theTrustees.


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26.2. ManagementoftheadministrationofCureEBhasbeendelegated(subjecttoafinancialcap)toSharmilaNikapotaandJamesCollins.TheyinturnreporttotheotherTrustees.Inparticular:

(1) Sharmila Nikapota and James Collins are primarily responsible foridentifying the services that need to be performed and finding suitablecontractorstoassistwiththeprovisionofthoseservices.

(2) SharmilaNikapotaandJamesCollinsareauthorisedtojointlyincurcostsofup to £2,500 per month in relation to the administration of Cure EBwithout further authorisation from the Trustees. Financial oversight andrecordkeepingisperformedbyRachelLesiter.

26.3. Inrelationtoprojectsandfunding:

(1) Sharmila Nikapota is in regular direct communication with leadingresearchersandcliniciansandwithotherpotentialfundingbodies.Shehasprimary responsibility for the initial identification of projects that maymeritfundingongroundsthatthey(i)furthertheobjectsofCureEB;and(ii) are (weighing the work that is to be performed and the potentialbenefitsoftheresearchagainstthecost)cost-effective.

(2) Theprocessfortheevaluationofpotentialprojectsdependsonthenatureandsizeoftheproject.Prof.DavidKelsellprovidesguidanceinrelationtoboththeprocessandtheevaluation.Heisalsoresponsibleforidentifyingexternal reviewers toevaluate theprojects and collecting comments andscoresfromthosereviewers.

(3) All funding decisions (including identificationof theproject to be fundedandtheamountoffundingtobeprovided)aremadebytheTrustees(asawhole).

(4) Having decided “in principle” to fund a project, negotiation ofdocumentationisledbyJamesCollinsandTazimHall.

(5) Project invoices that conformwith the fundingagreementsareapprovedby,andpaymentisarrangedby,JamesCollins.

27. ProfessionalServices:

27.1. James Collins in a commercial barrister and Tazim Hall was a solicitor andpartneratasubstantialinternationallawfirm.CureEBbuysinadditionallegalservicesasandwhenrequired.

27.2. Cure EB has not retained any investment advisor. However, Michael deLathauwer comes from an investment banking background and is currently afundmanager.


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28. Remuneration:

28.1. TheTrusteesarenotandwerenot compensated for theirmanagement roles(describedabove)norforanyotherrolethattheyperform.

28.2. CureEBhasnoemployeesbuthasestablishedrelationshipswithanumberofindividuals and organisations that provide services on a contractor or self-employedbasis.

28.3. CureEBhasbenefitedfrom,andrelieson,substantialsupportfromateamofvolunteers.Inparticular:

(1) Thefundraisingandawarenesseventsaresupportedbyasubstantialteamof engaged and dedicated volunteers. They provided assistancewith thedevelopment of the event, attracting supporters to the event, graphicdesign, logisticsand inmanyotherways.Without their support,manyoftheseserviceswouldhavetobeboughtinatconsiderablecosttoCureEB.

(2) The administration of Cure EB has been greatly assisted by volunteers,againsavingCureEBsubstantialcost.

Investmentpolicy

Fundsareheldasshorttermbankbalancesandlongertermtreasurydeposits.

Reservespolicy

Policy: Because the charityhas a lowcostoperatingbase it doesnot require a significantunrestrictedreservefund.

Forwardlookingstatement:TheTrusteesareconfidentthatthereareadequatereservestofundtheresearchtobeundertakenandcovertheanticipatedfuturecosts.


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Riskmanagement

Theprincipalrisktothecharity istheabilitytocontinueraisefundssufficienttomeetthecommitmentsmadetofundprojectsandoperatingcosts.

TheTrusteeshave(above)highlightedthefactsrelevanttothisrisk.During2018thisriskwasentirelymitigatedbyensuringthatreservessubstantiallyexceededcommitments.WhilsttheTrusteeswillmaintainexpenditurehigherthanincomeforthenextfewyears,(1)substantialreserveswillberetained;and(2)whenreducedtosuitablelevel,theTrusteeswillseektoensurethatonaverage(butnoteachindividualyear)incomeandexpenditurearebalanced.

PublicBenefit

TheTrusteesareconsciousoftheCharityCommissionguidelinesonpublicbenefitandtheseguidelinesareappliedwhengrantsareconsidered.


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Trustees’ Responsibilities in relation to the financial statement

TheTrusteesareresponsibleforpreparingtheTrusteesAnnualReportandthefinancialstatementsinaccordancewithapplicablelawandUnitedKingdomAccountingStandards(UnitedKingdomGenerallyAcceptedAccountingPractice).

LawapplicabletocharitiesinEnglandandWalesrequirestheTrusteestopreparefinancialstatementsforeachfinancialyearwhichgiveatrueandfairviewofthecharity'sfinancialactivitiesduringtheyearandofitsfinancialpositionattheendoftheyear.Inpreparingthosefinancialstatements,theTrusteesarerequiredto:

● Selectsuitableaccountingpoliciesandthenapplythemconsistently;

● Makejudgementsandestimatesthatarereasonableandprudent;

● ObservethemethodsandprinciplesintheCharitySORP;

● Statewhetherapplicableaccountingstandardsandstatementofrecommendedpracticehavebeenfollowedsubjecttoanydeparturesdisclosedandexplainedinthefinancialstatements;and

● Preparethefinancialstatementsonthegoingconcernbasisunlessitisinappropriatetopresumethatthecharitywillcontinueinoperation.

TheTrusteesareresponsibleforkeepingaccountingrecordswhichdisclosewithreasonableaccuracyatanytimethefinancialpositionofthecharityandenablethemtoensurethatthefinancialstatementscomplywiththeCharitiesAct2011.Theyarealsoresponsibleforsafeguardingtheassetsofthecharityandhencefortakingreasonablestepsforthepreventionanddetectionoffraudandotherirregularities.

ApprovedbytheTrusteesandsignedontheirbehalfby:

SharmilaNikapotaJamesCollins

Date:30October2019


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Report of the Independent Auditors WehaveauditedthefinancialstatementsCureEBfortheperiodended31December2018whichcomprisetheStatementofFinancialActivities,theBalanceSheet,CashFlowandtherelatednotes.ThefinancialreportingframeworkthathasbeenappliedintheirpreparationisapplicablelawandUnitedKingdomAccountingStandards(UnitedKingdomGenerallyAcceptedAccountingPractice)includingFRS102.Thisreportismadesolelytothecharity’sTrustees,asabody,inaccordancewithsection144oftheCharitiesAct2011andtheregulationsmadeundersection154ofthatAct.Ourauditworkhasbeenundertakensothatwemightstatetothecharity’sTrusteesthosematterswearerequiredtostatetotheminanauditor’sreportandfornootherpurpose.Tothefullestextentpermittedby law,wedonotacceptorassumeresponsibility toanyoneother thanthecharity’sTrusteesasabody,forourauditwork,forthisreport,orfortheopinionswehaveformed.RespectiveresponsibilitiesofTrusteesandauditorAs explained more fully in the Trustees’ Responsibilities Statement, the Trustees areresponsibleforthepreparationoffinancialstatementswhichgiveatrueandfairview.Wehavebeenappointedasauditorundersection144oftheCharitiesAct2011andreportinaccordancewithregulationsmadeundersection154ofthatAct.Ourresponsibilityistoaudit an opinion of the financial statements in accordance with applicable law andInternationalStandardsonAuditing(UKandIreland).ThosestandardsrequireustocomplywiththeAuditingPracticesBoard’s(APB’s)EthicalStandardsforAuditors.Scopeoftheauditofthefinancialstatements

An audit involves obtaining evidence about the amounts and disclosures in the financialstatements sufficient to give reasonable assurance that the financial statements are freefrommaterialmisstatement,whethercausedbyfraudorerror.Thisincludesanassessmentof: whether the accounting policies are appropriate to the company’s circumstances andhavebeenconsistentlyappliedandadequatelydisclosed;thereasonablenessofsignificantaccounting estimatesmade by the directors; and the overall presentation of the financialstatements.Inaddition,wereadallthefinancialandnon-financialinformationintheAnnualReport to identify material inconsistencies with the audited financial statements and toidentify any information that is apparently materially incorrect based on, or materiallyinconsistentwith,theknowledgeacquiredbyusinthecourseofperformingtheaudit.Ifwebecomeawareofanyapparentmaterialmisstatementsor inconsistenciesweconsidertheimplicationsforourreport.


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OpiniononfinancialstatementsInouropinionthefinancialstatements:• giveatrueandfairviewofthestateofthecharity’saffairsasat31December2018and

ofitsincomingresourcesandapplicationofresources,fortheperiodended;• havebeenpropertypreparedinaccordancewithUnitedKingdomGenerallyAccepted

AccountingPractice,and• havebeenpreparedinaccordancewiththerequirementsoftheCharitiesAct2011

MattersonwhichwearerequiredtoreportbyexceptionWehavenothingtoreportinrespectofthefollowingmatterswheretheCharitiesAct2011requiresustoreporttoyouif,intheopinion:• the information given in the Trustees’ Annual Report is inconsistent in anymaterial

respectwiththefinancialstatements;or

• sufficientaccountingrecordshavenotbeenkept;or

• thefinancialstatementsarenotinagreementwiththeaccountingrecordsandreturns’or

• wehavenotreceivedalltheinformationandexplanationswerequireforouraudit

HainesWatts(City)LLP69-73TheoboldsRoadLondonWC1X8TA30October2019HainesWatts(City)LLPiseligibletoactasanauditorintermsofsection1212oftheCompaniesAct2006.


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Statements of Financial Activities IncorporatingIncomeandExpenditureaccount Note 2018 2018 2018 2017 £ £ Income Unrestricted Restricted Total Total

Incomefromdonations 2 678,546 96,030 774,576 853,166Total 678,546 96,030 774,576 853,166 Expenditure Raisingfunds 18,581 0 18,581 104,178 Charitableactivities 3 944,509 199,020 1,143,529 893,360 Total 963,090 199,020 1,162,110 997,291 Netmovementinfunds (284,544) (102,990) (387,534) (144,372) Transferoffunds 0 0 0 0 Fundsbroughtforward 1,845,147 120,929 1,966,076 2,110,448Fundscarriedforward 1,560,603 17,939 1,578,542 1,966,076


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Balance Sheet

BalanceSheet Notes 2018 2017 Currentassets Cashatbank 1,917,253 1,966,076Otherdebtors-donationsreceivable

58,956

0

1,976,209 1,966,076 Creditors Amountsfallingduewithinoneyear-Projectcosts

397,667 0

Totalnetassets 1,578,542 1,966,076 UnrestrictedFunds 90,548 40,807RestrictedFunds 4 17,939 120,929Designatedfunds 1,470,055 1,804,340 TotalFunds 1,578,542 1,966,076TheseFinancialStatementswereapprovedbytheTrusteeson30October2019_________________________ ________________________SharmilaNikapota JamesCollins


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Cash Flow Statement Cashflowstatementfortheperiodended31December2018 2018

£

Netoutflowfromoperatingactivities (387,534) Decreaseincashatbank (48,823)

Increaseindebtors

Increaseincreditors

58,956

397,667

Cashatthebeginningoftheyear

1,966,076

Cashattheendoftheyear

1,917,253


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Notes Forming Part of the Financial Statements Notestothefinancialstatements1. Principalaccountingpolicies(a) Accountingconvention Thefinancialstatementsarepreparedunderthehistoricalcostconventionandin

preparingthefinancialstatementsthecharityfollowsbestpracticeaslaiddownintheStatementofRecommendedPractice“AccountingandReportingbyCharities”SORP2015.ThecharitypresentsitsaccountsunderFRS102.

(b) DonationandgrantIncome Incomeisaccountedforintheperiodinwhichthecharityisentitledtoreceipt,the

receiptisprobableandmeasurable.(c) Expenditureisincludedonanaccrualsbasis.(d) Taxation-asacharitytheincomeisexemptfromtaxation(e) Fundsstructure.Therestrictedfundsrepresentdonationsmadewherethedonorhas

placedarestrictionontheuseofthefunds.UnrestrictedfundscanbeusedastheTrusteesseefitinlinewiththecharitableobjectives.

(f) Goingconcern

TheaccountsarepreparedonthebasisthattheTrusteeshasadequateresourcestocontinuetooperate.

(g) FinancialinstrumentsandCriticalaccountingestimatesandjudgements

EstimatesandjudgementsarecontinuallyevaluatedandarebasedontheexperienceandunderstandingoftheTrusteesTheTrusteesdonotbelievethatthereareanysignificantestimatesandjudgementsthathaveamaterialimpactonthefinancialstatements.Basicfinancialinstrumentssuchasbankbalancesarerecognisedattransactionvalue.


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2.DesignatedfundsareunrestrictedfundsdesignatedbytheTrusteesforresearchprojectsinpursuitofthecharitableactivities3.Expenditureonraisingfundsincludescostsofadministration4.

Restrictedfundbalances

Balancebroughtforward

Income Expenditure Interfundtransfer

Balancecarriedforward

£ £ £ £ £ 120,929 96,030 199,020 0 17,939

Restrictedfundbalancecarriedforwardrelatesto1researchprojectinprogress.Allfundsareheldasbankbalances

5.NoTrusteesreceivedremunerationorwerereimbursedforexpensesintheperiod.6.TherearenorelatedpartytransactionsotherthandonationstothecharityfromTrustees7.Therearenoemployees8.Therearenocontingentliabilities

Documents

Report and Financial Statements 30.10.19 - Cure EB...Alain Hovnanian, Dr Matthias Titeux, Dr Anna Martinez and Dr Anastasia Petrova. In November we hosted a very successful speaker