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2021-12-31-accounts

Crohn’s In Childhood Research Association (CICRA) REPORT & ACCOUNTS for the year ended 31 Dec 2021

Registered Charity Numbers England & Wales: 278212 Scotland: SC040700

REGISTERED CHARtTYNUMBEEL. Eogjand & Wak&g18212 Scotknd SC040700 CROWS IN CHILDHOOD HESBARCH I'udorJohn l.imited Nighiingale Flouse 46-48 E&st Styeet Epsoni KT17 IHQ

CROHWS fN CHtLDHOOD RESEARCH ASSOCIATION Cojrtents of theFit)andai Ststements forth¢ year end￿ 31 Ik¢ember2021 Siat¢meth ofFinanaai Actlviti¢J 10 Detalled statementofFInand￿ Actlvilfe8 20 10 21

cROH￿s IN CHILDHOOD RESEARCH ASSOCIATION Report ofth¢ Tzwt¢¢8 for fhe year ended 31 DeCeth2￿1 The irusiees present their report iviih Ihe linanciic15tat¢ments of the charity for the wear ¢Dded i l December ?021. The trustees liai'e adopted the pix)vision% ol. Accounting and Keplirting by C'hatities.. Siaienieni of ReLommended Praciice applicable to charitics prcparing tl)eir accounts in a¢¢ord)n¢e wilh the Pinancial Rcportins StaiidaTd applicablc in the UK and Repiiblic of Ireland IFRS IO•I (cffcctivc l January. 2019). 'The I'ru5tees are confidcnt that during 20?] thE objective5 of ilie charity ivere rnet by coniiniiing 10 fund researLh ivhich increases knoivlcdg¢ undersianding of Crohn's dis￿Se and Ulcerative colit15. collectively kno%Yx as Inflanimatory Bowel Disease IIBD). Whilst seeking Ille cause and ¢ur¢ tk charily continued to provide suppom and inf0m￿tion for pdr¢nis and childi'en continucd to raise awareness amongst th¢ general public of the devastating cftecl this condition continues to have on yourtg live Activiiy levLIs Én 20? l eontinued to be atlecied by th¢ Covid-19 pandeinic which impacted both fI￿draising events and face to facc mcctings Such FLS Farnily Information Day% and th¢ Aivard5 Advi50rj Pancl. Objectives and alms The principal objects for which thc Socieiv is e8tablishcd arc for the relief of p¢rsons 5uffcTing from. and io promote and advance public educaiiott and researLh Into. Crohn's Disease. Ulceraiive Colitls and related disorder& Thc irusieLs have relenrd to the Charity Commission's general guidance on Public Benefit wh¢n revieivin8 their aims and objectives. Graabmaking Policy To meet ane of ils primary objectives, the Ch(Lrity invc5t5 in inedical re%eareli into the ￿USe$ ond trL'atliient of Inflammatory Boiyel Disease (Cro1￿.5 Disease and Ulcerative Coliiisl, p￿ticularl}. as it aff¢Lls children and young adulr5. Applicaiions for r&￿tarch lundiiig are ini'ited frorn Irlti'Anl mediLal and scieniific insliliitiottb find arc Ili¢n 5ubj¢cled lo a rigoroiis peer re￿ie1¥ prow8s, involving independent spcciali5t referees and the CICRA Aw1< rds Advisory Panel. '] }'pically. the research al￿rdS fall witliin four categortes= ?"year Research Training FelloiY5hip& 3-year PhD StudLntships. l-? Jear reseaT¢h projec15 arjd gi?Iit5 for Specific sialtsliLal projee15 rel￿ed 10 IBD ii) ¢hildhoLJd. Burbarv gTants to help iiith ilie costs of UK baled health profe55ionals aiid students in trainiiig Idociois: nttrses and finiil y¢ar ni¢dical 5tudtn151 involi'ed in IBD reseairh, aitending %cieniificlmedi¢al meeting5. are di￿ardid at tlib discretion of Ihe'rrustees. At the AnnuHI (ieneral Meeting licld on Microsoft Teams on il 51 .luly ?0? I tivo .1 Tustees. margarl￿ Lec and Dr l)hilip Smith, stood do¥￿ and ii'ere r¥-eleLted for a furtlier 3->e&r tern. At (his nieeiinE. Margarei Lee siooLI doi¥n as Chair and Crahani Lee assiiined the role ot Chair, haling b¢eii elected by the Iruslees. CICRA coniinued to operate %viih redueed siatTing through 2021. portlv du¢ to u)cenainty around the impact of the pandemic oil income, and partlj Itu¢ 10 the ¢onLlusion of the Globiil fvlake Some Noi5t grani which had fllnded a family support i￿OrkCi.. Margaret Lee coiitinued to be iesp)nsible for the researeli piocess. tlie day.to-dav accounting. li'orking ivith a¢couniants Tudor John Limited and geneial office aiid siipport ivork. Tru8lLLni'easurer, Simon Coleman. continiicd to be responsible for financial atlair5. Otliei. Trusiees continued io ulldertake addition￿1 aCt&￿IlLe5 in conncction iviih specific area% ol. wtsrk 5uLh a5 fiiiidrai5ing, inlormalion leihnoloan and represenlalion on extemal ¢ommiiiees. One additional pan-time siatYmembLf ivas hirL'd io support the charity"s Dctivilies. Page I

CROHNS IN CHtLDHOOD RESBARCH ASSOaATION Report ofthe Truste for th¢ yearetthd 31 Dec¢nther2￿21 The Suiton office reopened and remained open for the majority ol'?021. Wilh panaemi¢ restritiions ¢on(inuiiig into 20!1. the trusiec5 Colltiniicd to liold their comniiltee nieelings onlinc iising Microsoft TLams. Plans rcmained in place to rovcr an InCre￿d i¥OTkload which ivas duc to thc qucrics Irlaling to thc vulnei7Lbility of cliildren Ki'iih IBF). 'lThis in¢rea.%ed Ivorkload, iyiih a d￿reaSe{t siaff, Ivas able io be Tllet du¢ to Tru5ttes, wlio work on a iolunlai? ba5i& laktno on ¢.xtr8 r¢5ponsibilities and the current 51aff offerin8 to work exlrd hours also <>n 4 volunidfs b￿1$. Tlic principal objeciive of the charity is to r￿lisc funds to maintain 8nd expand a research piY)gramme lo help bring about beitei treatmcnts and quality of life foi. childrthi and )'oung adults isith Intlammaiory Boivel Dise&%e. Also, to dis¢ov¢r, tliroiigh good basic science, the cause and an eveniiial ture. Since its foiindatiun in 1978 CICRA hu5 fundcd 25 Tr￿nIng Fellowships, 24 PhD Students￿p% 62 Research ProjeLts and set up the lirsi Paeaia¢ri¢ Gastroenlerolog). Laboratory in the UK. Durtng Ihe period under reieiv CICRA ¢orttinued the funding of the tollowing research programme-. ResearchProjects Aiinabel David ai Oxford Universil>' I l yeai. proje¢i)- Understanding Stigma in adolescents with IBD Professor l.lolm Lllilig at Oxford Universii)'_ UK Bioiysource Professor P￿o￿a Ordon¢z-Moran ai Nottingham Universiiy- TArgeiing a Cxcl10.£u)proa¢h in Ulcerati￿¢ Colitis Renei%'iil ol'a tegular ¢onsuinable5 graiit to support tiie ivork undertaken in ilie Paediatric Gaslroenlerolog), Labordtory a( St BartholomeHl8 & The Rojal l.,ondon I lospitsil. In 201 I no buwry" grd•ls QT Jolin Eumshaiv aivards were niade io continued pandemic limitations. To ensure IrRI￿parEnCY ai?d appropriatc ai?plication of CICRA ftind8, Ihe Ti'ustees folloiv a sirici PLcr Rcvilw s>'siem using eNiemal referees froni the UK Und other couniries. and iheir own appoÉJiled Al￿ardS Advisory Panel IAAPI. all ￿orkIng in art li()iioraT)' Citpacily. Bosed upon thE recoMInend1c tions of ihe A%vards Advisory PHiiel and AAP Chairman. the Trustees meke the fillal decision and aii'ard the grants. -fhis l'eer Review 2¢ pplie.% 10 all 7¢ ppli¢ation% for finaiKial 5UPPOrt with the exc¢plion vt th¢ very niinor grants. Annual ￿"r1￿￿n rcport5 arc JEquiYcd tor all ftw'ai'ds ai?d are reviewed by the Tru81c¢s and edicJl Ailvisors. ClCtiA enbourdg¢s the publication OL both posilitre negative research resul15. Tw'o neiv researcli projccts, IvhosL graiits had been alY￿ded in 2020, started iii 2U21 after somc d¢lays ¢au5ed by thc pAndemi¢ and on Irack at ycar end. Annabel David s projccl Rlso expericnc£d 50mc dclavs however it is hoped ihai Ihis project ivill still conie 10 Iruiiion. Gi¥¢n ¢liebe delayed siaris, and cvniinued uii¢eAaini)' over posi-pan(J¢iiiic ¢￿h floiY5, the ITU¢￿ decTded that it ivoiild be prudent to not isstie a research call In 2U? I. CICRA coiitiniies to liold a Ceniticate of Good Practice from ihe Association of ￿led$La1 Reqeai'cli Cliarilies ii'hich enables the Lharilv Io [15¢ th¢ AMRC 2U20 audit logo to shoiv Ihai oui. prouess for granting aii'2L rds is of & l)igh sianddrd. Pagc 2

cRoHN￿ CHtIDHOOD BISEARCH ASSOaATION Report of the TnLWS forthey¢ar ended 31 Deexmbw2021 Informatiott alld SwTrp(Mt CTLRA work5 With Regional Pacdiatric CentiEs, speciali.8t units and also dislri¢l gentral hospita15 acr055 the UK Ivho treat children ¥%iih IBD aF]d distribute'parent Pack5. to thc parcnts of newl) dsa8nn.sed Children. CICRA iTrork-5 e105ely i¥ith Paediatric IBD specialist nurses • voritsus pae(liatrir gastroenterology uniis around the couniry, their regular contact ivith ihc young p%Jtients and families is vit21 and niu¢h appreciated. 5000 leaflets wer¢ distributed to GP surgeri¢b lu rase aKvareness ofiBD, p(wliLularly in babies and ioddlcr5. CICRA'Can'l Wait, cards are available for thildrei) to help theTn explain their condition w'h¢n in urgent need of a toilet. The ePals scheme puis young IBD 5ufferer5 in coRlact iviih cach olhcr via c mail and is gTeatl}' valued by its participants. retdback received from members in 2021 highlighted the value of this scheme in enabling young people to share Iheir expcracnces and realise that they arc nor alont. Ihave lovedb¢ing aparl ufePd15 8ndhav¢ made louds ofnewlriends. people Ivho undgnt2JJdme. The besi ihing about e-palsis bein￿able t(> talk to A young ePa15 user. The Iwo-year gralll froni Global fvlake Some Noise concluded in 201. This grant liad fund¢d faniily SLlPPOrt dCtivili¢s, parli¢Lilarly in rclation lo enjotioiial ivellbcing and school gllida*ee ftsT parents. OMSN had exteiidcd ik duration of the ni ihroiigh ?01110 alloiy for disTUPtioii ¢au5ed by thc pandemic. and alloii'ed paft of their grani to contribute toivard5 thc Gharity s running costs. Ilnfartunattrl) no famil) inforrnation days %vLrc hcld in ?(Y> l. initially due to formal Covid-19 rL'siri¢tiofjs and then out of conieiTh for the risk of assembling a large group of potentially ¢linically-VLtlnerable children. DemAnd for support greiv through 2021 as hell Ith service5 conlinLied io be stretclied and as the niimber of ¢hildr¢n aiid young people bein8 diagnosed ivtth IFID increased. Of some conccm 15 Ihal CTCRA cxpcrienced uni)reccdcnicd d¢niaDd tor 5uppoJi filim parents of extreni¢ly young children iyith IBD. The support whi¢h ClCtLI otTer5 remaills a lifcline for many familie5 In th¢&¥ rlialleiiging time& and 15 recognistd by boih parenis and prDlessiondls aliLe. The childron T￿lh inflammsrorv boFTrel dI.¥e&.￿ hatrv a vern unplewsanf lifelontt ¢ondifioii Tri."hich d(pes not hk7ve Ihe higli piofjle of ￿(her ¢ondJ¢ions. li is 6omnJon thal the childjpn thile tljis from iheir frieJ2ds n2Jinl.v due io the ¢mbdiiELFSEFient. Supprprt Irjr the cl111d￿n families tliis loiKIJ' pasi(iun is p'ilal io iheii. IveJl-b¢inD CICRA .¥ IpwL- oi'er ￿￿￿￿. Je4715 ljccn cssential ro supporting IhesL' childffn and Ihope ifiri.0￿ aljle 117 C(pntinuL to rtrieii ¢ ihe llinding required io coniinueiheiram&zing 11.ork. ProfNick Croft fvIBBS PhD FRCPCH Page 3

CROHN8]N CHILDHOOD RESEARCH ASSOa&TION Report ofthe Trustee8 forth¢ mdvj 31 D¢cen)ber2021 Most conferenLes and face io face meetings ii¢re untoilunatel). cancelled in 2021. In a nurmal year. these meeting5 provid¢ opportlinities to nctii'ork and co-ordinaic wilh healthrare profc5sionals and policy mak'Lrs as %¥'ell as lo le&lrn abolii the la1¢5t developments in Ireattnenls and possiblc causes of Inflamm210ry Roivcl Di.%ease. especiall}. &s it affe￿$ the ￿0￿ng. 'frnstecs norrnally pla) an dCtiK.¢ tole manning a CICRA inforniation siand. In 20? l Trusiees and biaff maiTrlained contact iiiili hc£ilthiare professionals and organi¥atiuns and iuned in lo niany virtual meetings. It should be noted Ihai Tiustees do not receive any retnuneration and only claim travcl and budgei stylc oveTnighi accomrnodation cxpenses. in line ivith the ¢liarity's expense ¥uideline5. Tlit CICRA newslctier compiled and edit¢d by the Iruslees and slatT, is one of Ilie tnain v¢hi¢les. along ivith Ihe }￿ebSite and so¢ial medii for publicising the effect that Intianlmatory Llowel Disca5e can liave on cliildrcn. and for ihe ptsblic to becornt mor¢ awar¢ of their rteed5. CICRA continues to Pliblish eas). to uiiderstand information Erfboklets which always in high demand. CICRA ¢oniinues tu develop and improve it$ websiie, %¥hich cOn￿lnS many information rc50urces, and maintains a SOCTal media presence, pi'imarily on Facebook where there is a thriving group. M¢mbership CICRA does not ¢haTge a fix¢(I tnembership fee as the Truste¢s coniinue lo believe ihai all parents of ihildrci) affe¢t¢d by CiY)ILn'5 disease and UlceraÉtvr colitls should have aLLess to CICRA lileraiure and infomiaiion on their child's condition, regardless ot. thcir financial position, biit tliey invite rnember5 to make a donation a5 and ivhen they ivish or dlr abl¢ to do so. All liierawre is issued fiye of charge. Mcmbership is opett to patients: patynis, IlieiT fcltnilics and Iriends, medtca Professionals and &in}one interes￿￿ in furthering the under51anding ot., and research into, inllammatory boiyel diseiL%e in ¢hildr¢n and young adults. As iviih kll olh¢r charities ￿ndraisI￿g by m¢mbers had been disrupted by the tyandemic. 202 I saw a IEium io some fundraising eveniE and the 1'ru51ees are very gratLfttl for Iht luyal SUPPOFI iyceived frotn nitniber5 Ihroiigh this pei'iod. Indeed. mcmbcrs have given don&iions in lieu ot thcir social spendin8 which have bccn invaluabl¢ lo the cl)arity. Links with oth¢r organlsadojjs CICRA is a member ol-the Association ol-medical Researeli Charities (A￿]Rc), the Notional In5tilul¢ for Healtli Resedrch INIHRI: the Naiional Council for Voluni&ry Organizations INCVOI and is regi5tcred iviili the Fundraising Regulator. CICRA continues lo work ivith BSPGHAN (British SoLiety of Paediairic G8slro¢nterology Hepaiology and Nulrilionl. the BSP(iHAN Public l)alienl Parti¢ip&tion IPI'PI TepTe￿ntatiVc and tlie five &ssiKiated gastro charities. CILIL4 e.xchanges nei¥sl¢iiers and iiifoi'malion ivitli Ihe many narional aiid intemaiiuntil organizations dealinTr with Inflammatory Bowel Dise&sc and responds 10 ¢iiquiri¢s frotn oversea5. sign posiin8 also to sist¢r organisaiion5 as approprtate. NANC￿ REv￿w As of ¢n(l of Dtceniber ?O?I tlie ac¢umulaied lunds stood ai £654,607 of ￿th1¢h £606,331 Irpresenicd unrestricted fuiid5. ResearLh Lonimiinienis f()r future jears and deiailed in Noi¢ 18 10 ihe aLYountS iimoiinl to £lJ7,87? Tn the J'ear under revieiv therc iixs no leeacy income. .1 ru51 inionie wvas £70,550 oilier activiiies lind Il¢naiion5 £?05.480 und in￿eStnieft( i#¢ome £?i8. Ot thc £654,607 accumu1atL￿ f¥inds ai i1.81 Dec¢mbci. ?0?1. £353,26i 18 in Fixed Depo8ii C?sli l.Iiiid5. Oiher surplus funds art in accounts ivsih CAF, COIF and NalWes(.

CROItNE IN CHILDHOOD RESEARCH Ass0aA￿0N Report ofth¢ TTuske forthe yearwded 31 Decemb￿2021 F￿c￿L BE￿8w (&)JJtd) I￿8¢1￿¢￿¢p0]l¢Y The Charity's c01151itulion authorises the Iruslees io make and hold inve51tnenls usiiig the fund5 of the charit). There are n reshctions on thc tTllStces' power to invLst, altho4gh Ihe ¢ruste¢8 take appropTiat¢ advice betore -ing any ini'esimenis thai carry more Ihan a luiv degree ol-risk. R￿e￿$pOlICY CICRA has no 5Lgnificant ￿Ure income, relying ￿lmoST loially on volutaTy ¢ontribution4 donatioii& grants and fund-raising a¢tiviti¢k In con5equellce ihc trlislccs belicve i1￿t it t8 es8ential io have sufficient funds to ensure continuity in Ihe tvenl of a iemporary iedu¢tion in income. The tTLlStees have agTecd a policv to hold reseThes on deposii equal to a minimum of six months opcr81ional eNpenses dnd covering loiig term commilinents. At the end of 2U21 ive eslimaie Ihese io be £140,0(Kl. In addition to this ive have £48,726 of funds restricted io specific prDje¢i% and £137.87? for future research ¢ommiunenis We ¢ontinuDubly revieiv OUT research programmc to cnsurc that ive are up lo date ivith curreni findings. 'fhe reniaining reserves ut'£i28,607 ivill be used lo fund reserLh reLoinmended to our Trustees bv our fvledi¢al Advisory Panel folloi¥in8 a rigorous PLer review. The-frw%te¢% have earmarked £2iO,000 olthi5 for a research felloii. and will lllnd [￿$¢ to add to the £78.607 balancc to enable extra research Prtsjects ¢0 bc ¢ommi&%ioned. oirrLOOK Although thc pandemic at'fe£ted our ￿'ork in 2021, the Trustee% aTe hopeful that a retum lo relative norrnality will alloiv us to in¢rease our LhaTitable a¢iivitie& To thi5 cnd. plans aTC under wa), 10 re8iaff our popular family inform¢iti(Jn day5 in the aulumn, %vith interesi expe¢ied to be high frotn both familie5 and medical professionals. At the time of wririn(p the research projects under Professor Holm Uhlig at Oxford, Profr550r Palorna Ordonez-moran al Noitingliam haie proven to be sii¢¢essful. Professor Ordonez-moran's pl.0j￿r delivered inleresiing rL'sults, based UPDn Ivhich she has now seLured a 3 year. £750,000 grnnt from the WelLotne Foundalion 10 continiie her studies. This IEpresenis a great return oii inke5tment lor CICiiA. and demonsii'ales holi. %Yell pl*ed ￿ed funding, Gan pol¢Rlially build momentum. Professor Uhlig"s rc5earch 15 ongoino havin8 been 8rantcd an ¢Nicnsion due to Covid disruption, and is looking promisin l-he Trustees consider that it 15 Vltal tliat CICKA continues lo lund peer reviewed research and to SilPPl>rt the famili¢5 and young peaple diagnobcd with Crohn's disease Ulcerntivc C'.olit15 Iihich continii&% lo increase, both IhL UK and a¢mss the world fur w'hich neiiher cause noi. cure are yei kiioivn. Much has been aLbieved over the year5 in ierins of diaonosis and trealrnenl of paedialric IBD. lioivever Ihe drdmaiic increase in preval¢n¢¢ we seeing toda>. means that rtsearLh is needed mo1￿ than ev¢r. Of particular concern is thc incrcase in Very Larl) Onset IBD IVEOIBD) in LxiiErnely young Lhildirn. Alongside the n¢¢(I tu r&tllP up research efforts. tlie Trustees igre ¢onscious of the need lo in¢rease CICRA'S support olTcring to MLXI unprL'ctdenled demiind tol 5LlPPOrt fioin concerned fainilie5. This 15 beinE driven parily by an in¢iYase in prevalLnce, and partly by ov¢r-strct¢hed health¢are services being unable to provide the patient support that ihey ivould like to. As Ive rebuild post-pandeinic. the Tru8tees are also rei'ieiting the stru¢tEire of the chRI'ity in ordcr lo cn5ure that it is s¢1 yp to achieve Éts iharitable ainis in tlie long term. A kev challenge thai (he ¢harit> faces is 10 groiy its income in ordcr io tiind the incrLasc in acLiviiies, siicli funcliaiser support, fatnilv dit!. orgaTri5alioii and adininisti'ation of ihe grani aivards prDL¢S¥ The c051 of living crisis ts expeaing lo piit ￿ddItIO11a[ pi'Lssure on CICRA. Looking ahcad. ?U23 ivill be Ilie 45 annivLrsar> of CJCRA'S founding ivhich the TTUSlee5 intend to mark iviih a fundraising carnpaign. Tile CILRA 'I'rustee% ivill coniinuL 10 fcviLW and manage the charil). as bvst th¢y ran during recovery from the pandemic and the current cconomic turbuleii¢e. They ￿711 do all thck. QlR io continue tar pos%ible Iiiih the ILSCiir¢li and 5LlPPQrt programmes plai)ned. As Ihe Counti7￿ re-opens and th¢ econom), re¢0￿¢T$. the luLus ikill be lo restore Ihe charity-s income and ranip up our iysearch. support and aibsreness elTorts. Al ilie present linic the conti'ibLltion thi4 t CICRA m&kes to th¢ fiLld of pa¢diatTiC IBD reinains as i'ital a5 ci'cr. Ive believe IhJi the surge n¢iv IBD dI(￿n05¢S LreLil¢s an ui'genl need for luriher researLh and suppori tor wlii¢li our inLorn¢ n¢edb lo Page i

CROWS IN ClItLDHOOD RESEAIiCH ASSOCIATION Report ofthe Th48te¢8 forthe year ended 31 DeKember2021 The charit). is controlled by its governing document, a deed of trust and cortbtilutes an u￿incorpOra1ed charilv. Tlie Crohn'5 in Childhood Research Asso¢iaiivn ICICRAI, an unincorporat¥d charitable assoctaiion, 18 registe￿11 in England &. Wales ullder Charity Number 278?12 and in SLOtland under Charitv Numbcr SC040700. CICRA is govern¢d by an

niended constitution adopted at the Annual Geiieral Meeting on 14 October 1989.

Re0￿1t￿¢1￿ ￿ appoinfmentof new tnthee3 Tlie board ofirustees shall be noi less Ilian six and not ihan live7￿.¢ mernbeTr of the A550ciation elecled at Il)e Annuol General fvlcctiiig. The trustees have the POiVLr to co-01)I members 10 fill a casual Nacancy or 35 an oddition lo the exisiing twstees. One lhi1￿ of the members of the Board shall retire eacl) year in order of s¢nioriiy bui may be eligible for re-clection The 'l'ru51ees meet on average th'ery six iveek5 Jnd a￿ responsible for determining pKJlicies. the budgel and overall tnllnagcmcnt of the charity. rhe small sratT Icani and offite vthlunleers are responsible for iindert&king the day-io-day running of ihe Associatioii. caTri'ing throuuh tlie policiL5, budget and dav to dav administration &% deiertnTned by tlic Board of Trust¢es. As well as repres¢nting ihe Cl￿tY at Inedical Elleelings some Trustees ¢ontioue to aciively assist in the office ajd in the organisation ol-E%ents. Neiv Trustees co-opied dui'ijig ihe year, or ¢leiied at Ilie AGM, ￿ gyiven an tnductloll COLllSe b)" the Cliair ollilining the objects a5 sel out in the Constitution. the i'oles of the oiher Triist¢¢s, the pr¢stnt liiiaiicial Standi￿￿ of ihe charilj aiid its eomniiiments. Twst¢es are asked io takc on or share responsibiltty for ovciseeing a certain aspect of the charity i.E. researc￿ fjnance. coMmL￿￿ea(1on te¢ht)ologies, oulTYach and supporL e￿. Thc rrustee.% continue 10 regularly oxamin¢ the strategic, bu5iliCS5 and operational risks to which (he chaiil), is cxposed, and confirm thai ihev haNe put in place s>'siems to niiiiaate ihose risks as lar a5 ihe} ore able 10 do. Englaiid & Wales 278212. Swiland SC0407(X> Pat Sham. Hoube 13-19 Veiitnor Road Suiion Siirrey SM.12 6AQ Ir G Lcc (Chair) fvlr S Colenian Ir P Cooper Ir N Gooding Mts M Lee MBE Miss C Mallo). Mrs N Pitney-l lall Dr P Sniiih Pagc 6

CROWS ￿ CHtIDHOOD RESEARCH ASSOCIATION Report of th¢ ThT8 for the yeer etth131 Dec¢mb¢r2021 Tudi)r Juhn I.1￿}11¢d Nigliiingale I lou.se 4648 Easi Streei Epso SuiY¢y KI-17 IHQ HotL AvwdsAdvlw Panel Prulessor I Sa￿derson {Ch&irman) Professor S Ennis Di. J Epstcin Dr R Heu5chkel l)rofe550r T Ivlact)onald Dr S Proih¢roe DrNJ Thapar P¥olessor H Uhlig Pro£essor D Wilson HO￿ ClinlcalDirerfoT DT R Han￿n and Signl￿d on its behalt bv.. /'1 Mr% MarB2rei l.ee MBF-TrusteE Pase 7

Indep￿d¢￿tExa0th￿8 Reporttoth¢Trust¢e8 of Crohn's in Childhood R¢8e4rch OCI￿lOn I rvport 10 the Gharity tru51ces on ni}, examination of the a¢LounlE of Crol?n's in Childhood Research Associalion lihe Trusii for rhe vear ended J l D¥¢embcr 2021. RwpoÉ￿￿I11ties aodb&8ls ofreport A% the charity Iru81ees of Ihc Trust you are responsible for the preparation of the accoun15 in accordance ivith the rcquirements of the Charilics Act 2011 I'the Act,) and Ihc terms of thL C.haritie% and -1 rustec InN'c51mcnt (Scotlandl Aci 2005. The Charity's trustees Lunsider ihdn an audii is not ￿qUired for thi5 }'car (under Sectinn 144121 of ih¥ Charitie5 Act ?01 l {thE 2011 Act1} and that ihe requirement ol. Regtslaiion 1011 Ila) to (¢1 of the 2006 Accounts Reguldiions does iioi &pply and ihat an independent c.xaminatlOJl Is requirLd. It is niy responsibility lo exarnin¢ Ihe accounts as required under Section (44IIKc) ot'the Act and 10 stale whdher particular mattcrs hal'e come to my all¢niion. l Teport in respect ofmy examination ofihe TnJ$t's accounts Ca￿led out under section 145 of the A¢r and in carrvingj OLrt Tll>' examination I have followed all &pplTcable D5reciions given by Ihe Charilv Coll)mi5sioI) under section 14515llbi ofih¢ A¢i and in accordanc¢ with Regulation I l of1￿ ?006 Accounts (Scotlandl Regulations. Since s'aur charity's gro&% in¢ome exceeded £2iO.000 your eyamincr must be a member of a listed iKxJy. I can confimi Ilia¢ am qualified to uttdertake ilie examination be￿ust l am a TC(P15tcred member of TCAF.W ivhich is one of th¢ li51cd bodies. I have con)pleled tn>' examination. I conlimi tliat no material maLters have ¢ome to Jny auenlion in connection iviili Ihe cxamination giving nic cause io believe that in any niaterial respect.. ac¢ounling record5 ivere nut kept in respect of ihe Trust as r¢quired bv section 130 of Ihe Act and Section 44{1 Ila) of the 2005 Act and Regulation 4 ol-the 2U06 Aecounls kegulalivns ISroilaiidl- or the accounts do t)ot accord t￿tth those re¢oTds', or Ihe a¢th)unt5 do not comply ii'iih the applicable reqoiremenis ¢on¢eming thc form con¥enl ofaccounis set out i the Cliai'ilies IAc¢ouiiis R¢port51 Regululions 2008 other thali any requiremelll Il)al th¢ aLcount5 give a true and fair vieiv ivhicli is noi a mai¢er ¢orn%idered a5 part of an independent exainination. I have no Lon¢ems and have Lome 8¢1'055 no other lliarters in connection with the exumination Èo ivhich attcntion.%hould bc draw￿ in this report in order to enable a proper und¢r5tsnding of the accounts 10 be reach¢d. H. M. Day Bsc FCA DChA ICAEW Tiidor Johii l.imited Niohtingale I4ous¢ 46-48 EH51 Street Epsum Siirre), KT17 IHQ Date.. aAI l&¢￿..,........... Page 8

CROKNE tN CHtLDHOOD RESBARCH ASSOCIATION S￿tment ofFlnancial Activittcs forlh¢ y¢ar end¢d31 D¢￿ber 2021 2021 Total fund5 2020 Total funds Unrestrtcied fi2nds Restricted funds NotES INCOMEAND ENDOIVMENI8 FROM Donaiions and legacies 184,892 64.133 249,025 227,998 Othcr Irllding activitie5 Investment income ?7.005 238 27,005 ?38 24,742 806 212.li) 276.?68 ?5j.546 Raising funds 5i,694 53,694 66,491 Research Support and inlorni41ion PTogratnTne 45.7)2 40,807 iI,904 86.539 76.300 17,845 Oilier 10,752 13,152 154,574 72,711 227.985 213.659 57,561 (8.5781 48,983 39,887 RECONCtLL4TION OF FUNDS 548.770 56.854 605,624 565.737 606.331 654,607 605,6?4 The notes form parl vfthese financial stalemenis Page 9

cROH￿s N CHtU)HOOD B£SEARCH ASSOCIATION Balaw¢ Sheet 31 December 2021 2021 Total runds Llnresiri¢ied fLJnds ResiTleted funds Total funds Note5 FIXBD ASSETS Tan¥ibl¢ absets Investments 514 353.077 12 353.265 3)3265 353.265 3i3,265 3i3,591 tocks Debtor5 Cash at b￿k and in hand 3.788 3.788 2.082 42,236 2)4,875 14 255,02) 48.?76 303 ?98 295249 48,276 343,525 ?99.193 Amounis lalling due ivithÉn vne vear 15 142.183} 142.1831 147,1601 NET CURREVTr ASSErs 253.066 301,342 •5? 033 TOTAL ASSETS LESS CURRENT LIABLITIES 606.331 48,•76 654,607 605,624 606.331 48.276 654.607 605.624 un￿striLled fund5 Restricled tunds 606.331 48.•76 i48.770 50.8)4 605.6?4 The financial 5tatcnicnts ivcre approved by the Boar(l ol'l'ru%tees and authorised for issue on 17 septellLber 2022 and %¥er¢ sign¢d on ils behalf b!.: Mr5 fvlargarct L¢¢ bJlBF.- Trusiee S Colenian TrLisiee The notes form part ot'ihese tinancial slalemeni Pot*e 10

CROHNS ￿ ClllLDHOOD RESEARCH ASSOCIATION fortheyeor ended31 DecembEr2021 ACCOUNfINGPOLICIBS BASIS OF PREPARING THE FINANCIAL sfATEMENrs The linancial statement5 Ot thc charity, lihich is a publi¢ benefit enlity under FRS 102. have been prepared in accordance ivith ihe Charities SORP (FRS 102) 'Accounling and Rcporting by Charitie5'. Statement of Recommended Praclice appli¢dbl¢ io charilies preparing their accounls in ac£oi'dan¢e iviih ilie Finan¢id] Reporting Standard applicable in the UK and Rcpublic of Irelanij IFRS 1021 letrective l Janu&rv ?0191', Fin21)ci>d Reporting Standard 102 '1"he Financial Rcporting Standard applicable in tlie 1111 und Rcpublic of Ireland, and IhL Cliarities A¢t ?01 l. Th¥ financia] statements h(Iv¢ been prepared iindcr the hi81oYical cost convention. with tlie cxceplion of investments which are included ai market value. FINANCbiL REPORTING STANDARD 102.IIEDUCED DIScLOSUREBX￿ry1oNs Tl)e charity has taken advantagJ¢ of the folloii'ing disclosure exemptions in preparing these financial statements. as permitted by FRS 10? The Financial Reporting Standttrd applicthle in the UK and Republic of Ir¢land': the requirements ofsection 7 Statcment of Cash Flows. COMB All income is re¢ogni5cd in the Siaterneni of Financial Activities oiice the charity ha5 entiiletnent to the lunds, i¢ is proboble that the income i¥ill be receivcd and the amoiint can be m¢asur¢d reliably. L,iabililies are recogniscd a5 expenditure as s(￿n as there 1$ a legal i>r constructive obligation cornmilting ilie charity to that ekpenditur¢, it is probable that a transfcr of cconomic benefits iiill be required in settlement and the amoun[ ol-the obligation Lan be measLired reliabli,. E.%pen(liluF¢ is a¢counled for on an accruals basis and has been classified uoder lieading5 that aggregate all cost related 10 the Laiegoiy. Whrr¢ ¢0515 Gaiinot be directly altribiiled to pJrti¢ular hcadin&s they h&ve been allocated io activitie5 on a ba515 consi.*ent iytth th¢ us¢ ofrcsour¢es. Giants off¢red subjea lo condition5 which have noi been mei at lh¢ year end date are lloted as & commiiment bui noi accrued as expendiillrc. TANGIBLE FEIED ASSETS DeprLLiaiion is at Iht following annual rate5 in ol'der io oft'each assei ovei. tis esiitllatd u8eful lif¢. Computer equipm¢nt Furniture aiid equipmenl 330kn slraighi line 20 33Y• 51Yaiglit line STOCKS SÉock5' are valued at the lower of cost and net it￿lS&￿1¢ value, after iiiaking due alloivan¢e for obsoleie and sloiy rnoving ittni5. TAXATION The ch&'iiy is exetnpt trotn lax on lis charitable activiites. FtrND AccouNrTrio Uiireslricied lunds Lan be used in a¢¢oTdanLe ivitli the chariiable objeciives at Ihe dis¢reiion ofihe irustees. Restricted funds can onl). bc USLd for particular rcslri¢ted purpi)%¢% ii'iihin the objcct5 Ot the chariry. Reslriciions arise ii,hen speLified bj the donor ur ii'hen lunds are raised for particular restricted piirposL'S. l."urther lxplanation ot the natiire and Purpose ol'eacl) fund is included iii the note5 to ihe finaiicial 5tatetnenis. Continued...

cROH￿s tN CHILDHOOD B￿EARCH ASSOCIATION Notss tothe FIDattcial Stat¢m¢Dts. continued for the yeor ended31 De￿mber2021 ACCOUNfiNG poIJaBS. ¢4ntiDued PENSION cosrs ANJ) OTHERP0ST.RETlllEM￿BENEFITs 'I'he charit). operate% a dLtinLd coniribulion pensi()n scheTn¢. Conlribuli011s payable lo the charily's pension sch¢me are bharged to thc Statcmcnt of Financi&l Activiti¢s in th¢ pLriod io ivhich they relate. Investments are shown in Balance Sheet ai the )'car eiid niarkei value. An) UDr¢ali5ed gains oi. losses on revaitjatton re accounted for in the period in M'hich they ari.%e. Realiscd and unrealised gain% and losses are combined in the appropriate section of Ihe SOFA. 2021 2020 lerchandise (incl xmas) Chri%ima51sunimcr dralv ?00 Club 7,701 11.447 5.)94 12,982 6.083 27,005 24.742 2021 2020 D¢posil aLcoLtnt Énlerest Srhr(KiEf5 Fixed Interest acLounl 50 188 350 456 238 806 RATSING Ftrr4DS RAtSINGDONATtONS AND lEGAc￿s 2021 2020 Staff costs "L'rusl¢t5' expenses Poitiigt and Stationery otficL COSts1400/o} larkeling adv¢ntsing Legal aiid bank cusis 7,951 ?0.6?3 485 2.657 2,851 19,04? 276 63 i.690 l i.804 139 ?,012 1,554 5,626 Oihtr fiindraisin(t expenses Slall'e.xpenses Oiitsourcin8 2.8)2 51,895 Page 12 ontinued...

CROHNB IN CHtLDHOOD RESEARCH ASSOCIATION Noles totheFiDan¢iai Stat¢m¢nts. continu forthe year ¢Jthd 31 D¢cemb¢r 2021 Direct Co.%ts {see note 61 Granl funding or aciivities 1'otals R¢s¢awh Suppon and information progr8nime 7,i2i 79,014 86.339 76,300 83,825 79.014 169.839 2021 2020 Staff costs Trustee5' exp¢ns¢s Po$iage (Ind staiioD¢ry Officc ¢osis1600Jy) Mark"ctit]g and adv¢rttsing Familv meeiings Legal fee.s Outsourcing Siiiff expenses Dep￿rial10n 20.047 1.027 5.295 28.563 1,926 5,044 ?7,367 17,(J38 1,197 95 4,518 1,639 1.903 540 2.332 4,278 513 83,82) 122,559 There iThere no trustees, remuneration or oiher benefits for the year ended 31 December 2021 nor tor Ihe }'ear ended 31 D¢cembei' 2020. ?021 2020 Tru51ccs' expenses 2,411 No TIu5tee rece1Tr￿ an>. remuneration for Iheir servi¢cs as o I'rusiee. A total of £2.412 (2019.. £5,i¥91 was reimbursed 10 4 TrJsiees12019.. 51 of ivhtcli £82912C>19.. £8871 %%'as tor goveman¢¢ purposes. Four Tnistees c￿rry oiit iask-5 in ftirthciznce ol'ilie cli£uity's objeitlW¢5 on an expen5¢5 onlv basis and these costs hdl'¢ b¢¢n alloLaied a5 appropriate to Research. Siipport &. Inlormaiiiin and Cosi of (iencrating fund5. Page 13 continued...

CROHNB LN CHtLDHOOD RESEARCH ASSOCIATION N¢rtesto th¢Finan¢ial Statements. contitiued for th¢ y¢ar ¢nd¢d 31 Decembff 2021 The 8verage morÈihl> numbei. of employec5 during the year was as folloms.. 2021 2020 Administratio No employees received emoluments in excess of£60.000. COMPABATIVESFOR THE STATEklEKf OF FINANCIAL AcnvrrtES Unrestricted lunds Resiriaed funds Total funds INCOME AND ENDOVIMENTS FROM Donations and legacies 153.fvI8 74,450 2?7.998 Other trdding acttvities Inv¢sttnenÉ income 6,490 24,742 806 806 172.606 80.940 ?5J.546 BTrENDITURE ON Raising tunds 66.49 66,491 Ch8rItsble a¢tlvlt1¢8 Research Support and informaiion pi'og¥amnie 17,845 64,601 17,845 51,570 Other 13,1)? 16?,089 51.570 213.659 10,517 29.370 3.146 3,146} 13,663 26,224 39.887 RECONCIUATtON OF FUNDS 535,107 30,630 i65.7J7 TOTAL FUNDS CARREBDFORWARD i48.770 56.8iJl Pa2e 14 continued.

CROHbPS IN CHtLDHOOD BISEARCH ASSOCIATION forthe year endeA 31 Dewnb￿202l io. The charge for the year is made up as follows: ?020 2019 Creditor brought for¥&ard Payrnen15 dui'ing year Crcdito¥ caffied foTward 11,700) 1.700 136,8961 57,103 1,700 21.907 ii. TANGIBLE FIXBD ASSETS Improvem¢nts Fiytures property rittings Toials COST Ai l Januai? 2021 and 31 De￿Inber 2()21 3,850 49.156 53,006 DEPRECIATION Al l Jaiiuary 2021 Charge lor )'ear 3.336 514 49.li6 52,492 i14 Ai 31 December 2021 3.8iO NET BOOKVALUE At 31 Deceniber 2021 At 31 December ?Q?O 514 514 12. 2021 20?0 Oihcr 353,2<>i 353.077 There ii'ere no ini'estment &ssets outside the UK. Investments {neiiher listcd nor unli51edl wvere as follows: 2021 o?0 Schroders Fixed Deposii aLcount jj3.?65 353.077 PagL I) coniinued..-

ASSOCIATION forthe year ended 31 Decethr2021 13. 2021 2020 Stocks 3.788 2.082 14. ?o?I ?o?o Othcr debtors Prepay]neiilS and abcrucd income 4.692 36,439 42.236 15. CREDITORS: AMouNfs FALLINGDUE WITHIN ONB YEAR 20•1 2020 Trade ¢rediiors Taxaiion and social se¢uriiy Other creditors 36.026 126 6,031 21,424 260 25,476 42,183 47,160 16. Miniffliitn lease payrnenl5 linder non-cancellable opevdting leases fall due as folloiis.. 2020 Within y¢dT 26,447 •6.447 PLoe 16 continued...

CROHN'S IN CHILDHOOD RESEARCH ASSOCIATION for the year ended31 De4embtr2021 17. Net movement in funds Transfer5 between funds At At 1.1.21 Generol fund Designaled fund i34.216 214.554 57.561 76,682 (76,68• 468,459 la7,87? 548,770 57,561 606.331 Support meetings Family Days Rescarch grants Parenting packs Global ￿lake Some Nuise 7.￿1 16,0(K) 241,690 1.891 8.892 16.000 14.383 9,000 110,307} 9,000 19,1621 9.16) 56.854 18,5781 48,276 TOTALFUNDS 605.6?4 654,￿7 Net movertlenl in fLtnd5. included ihe abov¢ ar¢ a$ folloiv5'. In¢oming resDuree5 Resources e.KpenJed Moi'Lment in funds General fiind 212,135 (154,574} 57,561 Support meetings Reseairh ¥ranis Parenting packs (ilubal Makc Some Nois¢ 3.800 iO,S00 9.000 {1.909} (40.807} {10,i071 9,000 9.162) 129,9951 64,li3 17? 711} 18.5781 276.268 1227.2851 48.983 continued...

CROWS IN CHtLDHOOD RESEARCH ASSOCIATION Not¢s tothe Fljwwlai Statements. ￿lltinUed forthe year ￿ded 31 Decernbv2021 17. Con4JWlves foTmov¢m¢otin funds Nel mov¢mcnt in funds Transfers bctwecn fvnds Ai 31.17.20 Atl.1 ?0 Gcncral thnd Designated flind 498,573 10,)17 1174.8741 178.020 334,216 214.554 535,107 10,517 3.146 548,770 Researcli- PhD stud¢nt5 Siwport meelin(T5 l.'amilJ r)ays Re%earch giants Global Mak¢ Some Noise 3,146 8.688 16.000 13,1461 11,687) 7.001 16,0(M) 24,6q) 9.163 24,690 2.796 30,630 29.370 lJ,146) 56.854 56i.737 39,887 605.624 Comparativ¢ net mov¢meot in liinds. iiicluded ill the above are as lolloiv3: Incoming resour¢es Resourccs expended Mnvem¢nl in ftinds General fund 172,606 1162,089) 10,517 Support meeiings Re5¢clrch giTrnls ParentTng packs Global fv18ke Some Noise 4,750 24.690 1.500 iO,000 16,4371 (1.6871 ?4,690 11,500) 43,6331 6.367 80.940 151.5701 ?9.370 TOTAL FUNDS ?53,546 l?1 J.6591 39.S87 Sw?portMttUttB5 This fund represciiis omounts donated to CICRA toivar(L% the cost of the Support Me¢tinu5 held. This fujxl rep￿sentS amount% donated to CICRA ioivard5 the LOSI ok ResewLh Grants. ParentlngPa¢ks l-liis tund rcpresenis artiounis donated to CICR.4 toivards the costs of providing pa￿nting paLks. Pa8c 18 Loiiiinued.

cROH￿s IN CHILDHOOD RESEARCH ASSOCIATION forth¢yearended 31 Dee4mber2021 17. Olobalmake SomeNolsa -l-liis lund represertis aiTSOURts donated to CICRA by the Global Make Sotne Noise Charity loivards th¢ COST of a SilPPOrt iYork¢r. 18. Thc Charity has fuiure grani commitments alrcady entered into and spread over th¢ years to 2022 - 20?4 in¢lusive, tulalling £137,87212020.. £214,554) These multi-year grants are revi¢wcd annually and payrncnls for sccond and subsequertl years are vnly made upon receipi 01. 5aiisfa¢ioTy Progress rcports. Con%equenily, Ihe Iruslecs do not consider it appropriate to rnak¢ provisson for these commitments in the rj￿￿claI slatemenis. Existing Tesrarch commitnicnis.. Grant awarded io.. Dr Annabel David, Oxford Universit). (Delayed due to COVID} Grani ai¥arded to.. Prof¢550r Holni Uhlig. Oxtord Uiiiversily Grnnt awarded to.. Assr. Prof¢ss(¥r l)aloma Ordonez-htrloi'an, N(Triiingham Uiiiv¢r51ty Laboratory consumables 8Mni'. Prof. lan SandeTson, Burts & the Roval l.ondon1.105Pltal 36.534 74,450 12,488 lJ7.872 The itniing of Ihe above comMÉtn]ents is as follows= Grant Commsim¥nts 2022 Grant CommitniLnts 2023 Grani Commiirneiit5 2024 80,178 49.422 8,272 19. REL4TED PARTY DJSCLOSUBES There were no related party Iran5aCtions torthe year ended 31 Decembcr ?021. Pa8e 19

CROHN% EN CHILDHOOD RESEAIiCH ASSOCIATION for theyew ¢nded 31 December 2021 ?o?I 2020 DO￿ and le￿1 Di)nalioD5 Legactcs 249,0?5 2?J.658 249,0?5 227,998 Mettyhandi%e (incl xmas) Chri5tmas/summer draw 7.940 7,701 1.447 5.594 200 Club 6.083 27,005 24,742 D¢posit aLcoui)t interesi Sihroder5 Fixed Interest account 50 188 iio 456 806 276,?68 •53.546 Raising donatiooy and legacks 'rru5t¢es' expeiisc5 'ages SIKial secLiriL)' Pen5ion5 Postage and 5tarionery Oftice ¢osts140O/0) Mai'keting ￿7nd advertising l.egal and bank costs Lotterie8 Other fundraising expenses Sknft ¢xptn5es Oulsoiircing 485 19,478 757 388 2,657 18,24) ?76 63 3,690 13.804 li9 3,012 7.788 86 77 2,8il 19.042 .)54 i,626 23 2,85? 51,89) 62,994 M¢r¢handisc (including Christmas ¢ard$ 1.799 3,497 -I'his page does not forni part ofihe statutory tinaiicial slateinent5 Paoe ?0

CROHNS IN CHILDHOOD RESEARCH ASSOCtATION Detailed Stat¢thent ofFiD3TKialAotsvitt for th¢year¢nded31 D¢¢embtr2021 ?o?I Cl￿rItable 8Ctivtties Trusiees, expenses Wages Social security Pensions Posiage and staiionery OffJLe eosis {60¥o} larketing and advirtiSln8 Family meeiiNg5 Legal fees OiitsourLin8 Staft expenses Depreciation of tangible fixed asseL5 Giants to insiiiutions 1,0?7 1,926 i7.890 2,631 27.367 17,038 1,197 95 4,518 ,639 1,903 1,4)7 18,172 540 4.278 3,058 79.014 162,839 134.016 Wages Social strciiriti, Pensians Trustee in8urnn¢e Accoun12nLy l.egal and bank costs SiatTexi)enses 7,705 421 200 991 ,2?6 i,500 ?89 2.989 525 70 10,7)2 13,152 TDlal Ttsources eNpend 227,?85 ?1),659 Nrtincome 48.983 39,887 This pag¢ does not foTElI part of thl 5Eatuiorv tinancial staicmenls Pa8e?I