RETINAUK Wlblllllll FOI PIOPII YIITN I11￿11T•￿ IMIIT io Retina UK A Charitable Incorporated Organisation Annual Report & Financial Statements Year Ending 31 December 2021 R•tina UK R•f•r•nG• and admlnlBtratlv• d0tall8 For the year •ndlng 31 Doc•mb•r 2021 Charlty numb•r 1153851 Ro918t&red offlc• and Retina UK operatlonal addr•M PO Box Buckingham MK18 1GZ T•l•phon• 01280 821334 RetinaUlQ¢xg.uk W•b•h• wMv.RetinoUK.(Yg.uk Honorary Pr••ld•nt Mr¥ L￿da Cantty MBE Tru8t••• Trustee8 80rNed during the and up lo tho dale of th￿ report wore as follow6: Or Mwiin Kkkup (Choir fr(xn 17 2021) Mr Don GrcKott (Chair unts'l 17 AprH 20211 Mr Roger Backhouse Mrs Lynda Cantor M8E MS Janet Crookés {Troa8urer) Dr Ellzabeth Graham Prof John Marshall MBE MrB Rachael Stev￿9 Dr Lucy Wlthlngton Mr Slmon Keighlley (TN8tee from 26 January 20221 Mr Pare8h Makwana (Trustee from 26 January 2022) Mr Ashley Grisl (Trustee from 26 janu￿ 2022) Ms Vanessa Forstw {Trustse Irom 26 January 2022) AMb￿s￿d0￿ Mrs Bhav6ni Makwana Mr Steven Bate MBE Mr Amar Lalff Mrs Seema Flo Mrs Vthrkq Claire Chl•f Ex•Gutfve 0ffl¢or Ms Tlna Gar4ey Prln¢lpal Bankorn Lk)yds Bank PLC 187 Wauing Street NN12 6BX Audltorn ts Audit Servi¢88 Epsilon House The Squarn Gk￿￿ter Buslnoss P G1￿ces18r GL3 4AD This document is laid out in size ten font. but can rnagnrf￿d rf you are using an eIth￿IC verslon. Ir you aTeJ visually impaired and would like a (￿pY of this d¢)cumenl in large prirt ￿aSe ￿ntact U8 sLqtlng th8 font size most appropriate for your owm use and V+e will be happy to provlde this. 2of40 Rotlna UK Chales Roport For the yoar •ndlng 31 Doc•fflb•r 2021 T1￿ past has been challenglng and the charity has n8C8ssarly ￿￿rtai1*d it8 advmy and Its spend in a Caut￿￿$ manner to refiect the crrtinued u￿AlaInty that has aff￿ted research, fundraising ond the economy in general. Pb)wever. l am proud lo say that ts chwity has once agaln rlsen lo tho Challenge of SUPF#)rting Its community by resp￿ding imkYessNdy to a signrfrantty hlgher of d8mand flx suppyxl from people living wlth an inherrted rdnal dystrophy (IRD) who have I￿1nd Ihe year every blt as chaI￿ngi￿a a5 the last with the continuing impact of COVID-19. Consequently. the￿ is a swJnffic8nt fi￿u8 in Ihis yearfs annual report on the Important inforn)ation and Support wDrk ￿l[led out by Relina UK team. Duriry the year, rasewth fundlng ha8 to be partk%larfy hard hlt ty tho paThlemk. Thi5 has been refiected across the ch8rity sector and is far from unique lo Rellna UK. As has iwn ca8e across medical re8earch. the malortty of pr(4ects funded by Retina UK experienc￿ delayJ ar¥J kgb do$ures. Notwlhstanding the d￿fICUlt e¢onoml¢ conlext. the charlty genèrdled a total in￿rne of £1,239,135. We are enomiously grateful for th Support r￿￿[vod from the ccffimunlty ar￿ from Sndr¥Mknals, trust8 arvj ￿r￿)rates. De8plte the challenges many re8ewrts8 have fac£d. they ￿ntInue to wxk wlth energy and a delemilnation to flnd new understandlng and thwapbs and thL8 glves u8 gr881 hope and promise f¢x the future. We were pl888￿ to provlde nokncost extenslon8 88 requlred 80 that grantees could achieve the aims sel out in thelr orlginal olect prop08a18 and. desplte Impact of thè parKlern￿. ￿ still fuThJed nin8 reséarch yolecis. In 2021, Retlna UK a180 contrlbJted to the NICE Process Rovkn* consultatlon arrtl continue8 to engage wbth 8ector partn8rs end the pharmaceutlcal IrKlusty lo e￿Ure that fubjre therarmes we made available lo our ¢ommunlty. Moreover, recent Fwres8 In dlnkal trfals for genwno8iK cdkb8wJ Ihgrapios for r6tinllls plgmenlosa (RP) ha8 been of 9real Inter8sI lo I￿>s8 lI￿ng wllh IRD. LooklrvJ f(Kw8rd, the chartty18 d8ternln8d to dr1¥8 fornmd in 2022 and l&ke evffy oppthinty lo relnvlgorate fvnd ralslng actlvltles VI￿rkIng ￿th our (yJmmunty, individuals. trusts aThJ corporates. number of op￿￿1¢allOnS rece￿￿1 our 2021122 grant rwnd tKings much pos￿*￿. The proposa￿ indude subslanlfve w)lects lo Investwte trealmenl apwoaches Ih818re either independent of the speclfK und¢dyirKJ ggnellc ¢8u8e of Slghl I￿6 or address a group of 8imilw genetic ￿U8¢S, offering hope to a large proportion of ttr Retlna UK c(Mnmunlly. We look forKard lo providirvj updates on new awwds later In the year. l am partlwlarfy exdted Ihat th8 8oarrl of Trustees has been joined thls ￿Or by fow n9w members, ￿h1•Y Gdsl. Slmon Keighlley, Vanessa Forster Paresh Makwana who bring valuable experience in the fiolds of ophlhalmcdogy, law, bJsiness deVelopm￿t and phamawJticals. They appointrnents will be submltted for rat￿Ul￿On by membershlp al the AGM. Ashley Grisl will be takiro 0￿r as Trea$wer from Janet Crooke5 wll be retfflng in the c￿r8e of 2022 after long and valuable servKe. On behaw of Retina UK l *t)uld like lo expyess my deep gratitude to Janet f(ff her Serv￿e, her dedication arKI C￿n581 ovef many and wish her tho very best for Ihe future. Dr M Kirkup Chair 11 May 2022 3of40 Rotina UK R•port of th• Tru•tOOS Forth• r •nding 31 Dec•mber 2021 The Truslees are pleased lo annual reFXYt tog8thw y￿h th8 fInar￿￿4 statements of the charlty fcrf the year ending 31 D￿rni￿ 2021. The finanryaf statements have been prepared in s￿rdanCe with the ￿fttIng polKi8S Set out in r￿te$ to the accounts and comply wth the Charity's governing docum•nL tho Charitses Act 2011 and Accwnting and Reporting by Chariti8S'. Statement of R￿￿mmended Pr*￿e applicable to thariii85 preparirvJ ther accounts in aCCordar￿8 vAth Ihe Financial Reporting Starwjard applKable in the UK and Reput￿￿ of Ireland IFRS102) (effective 1 January 2019). Structure, Financ• & Governance Gov•mln9 documw7t Retlna UK is a Charitable Incorporated Organisation (CIO). The charitys cortstbtutb)n was regisiered on 18 September 2013 as eharty number 1153851 and amendeAI on 19 June 2018. The charity was orvJin811y reglstered as th& Bntish Retinili8 Pigmentosa SoC￿ty. fomed In 1978. arKI Subsequently known as RP Flghling Blindne8s until June 2018. AJI the assets arKI liabilities of the original Gharlty Were trgnsforred to the current CharitAbl8 Ir¢n on these applic8tKJns will be made in spring 2022. We respmded to the COVID-19 pandern￿ by adapting and being more Inrnvatfve vthh our Infom)alion and Sup￿ wovlslon. Our Annual COnfe￿nce and Profess#)nals' Conferences went ahead online rather than in p￿n with Very positrve feedb&k. This has resulted in 8 decision to hold the 2022 Conference in hybrld fom to enabk delegates lo join us in person or online. We 8180 introduced a series of wetmnars In the last quarter of the year *thich were recorded and made availatAe for people to aftw tr* ev6nL thése have woven very powlar and wlll contlnue monthly in 2022. Other plans for 2022 iThSude to dovelop r¢w resour￿5 io support our (*)mmunty to manage thelr wellbeing: grow our local $UPF#Yt group arwnd the UK and gain fvrther insyht into our communty's exFeriences through our sight loss trackirvj survey. Page 6 of 40 Rotlna UK R•port of th• TnMIo For th• yoar gndlng 31 December 2021 Objectives & Activities Our Ml88lon We are trE only UK chadly dedlcated excluslvely to vthing for people affected by inherited sight loss. [￿r viswjn is a world where evertrD￿ wlth inhwi1￿ $wJht kjss is abl8 to live a fulf￿11r0 lrft. We stimulate and fund medlcal research lo Ir￿rease the urKIws￿dln9 of ttwe condllkins and lerate the 8e¥ch for treatments for the future. We conllnue to Invest In the very best med￿￿ research. as revlMd by our independent Medlcal Advlsory Board {MAB). Th18 panel rx)nsists of expwt wothJ-r8specaed scientists and Tr$ear¢her8. Rellna UK Is ￿MMItted to ¢0118borative vthlng *lthin the of M￿lc81 re88arch. We partner whh leadlng research and olher sector4eadiw tharitable organisallons wfth ￿mIlar alm8 arKJ objectives lo We provlde Infomiation and supwt to hdp people lead better Ilves and to w￿ure no-one wllh Inherfted $loht1088 need feel aton8. The Trustees have paid due regard to guidarKe issued by ￿ Chadty Commb8lon on Publlc Benefit In decldlng vthat actNltie8 the charity 8hould undertake. chievement & Performanco Research grant fundlng The charfty Is a member of Ihe As8cKaalk)n of Medlcal Resew¢h Chwllieg and abldes by wlnclpl88 of best praclke In peer revlew when prk)rt1SslrvJ whkh research 8ppli¢ath)ns demonstrate the best Bcienlffic merbt and Ilkellhood of patlenl b8nefft. These wrKiples irK4udo the use of a completely Independenl Medlcal Advl80ry Board wh*h mthes re(x)mmend8tK)ns to the Board of Tru8lees regardlng the best research appl1catl0￿. Medical Research The following project 8ummath glve an 0Vw￿6W of the medKal fe8oar¢h funded by the charty, whkh were uThlerway in the year 8￿11r￿j 31 December 2021. The majority of proSeds funded by Retina UK experienced delayd to I￿01r work stream$ In 2020 due to the COVID-19 parK16mK and a￿lated lab dosures. wh￿h had knOc*￿n effects on projed timings In 2021. We have been pleased to prowde noce85 Is Or￿ of the mosl common causes of RP. but desFMle thi8 defect re8K4iro in all ¢0118 of the body. the retina i& tho only118$ue affected and the rea80n8 thi8 we not fulty underntood. Prof Lako's tèam generated retlnal rAll$ fr(Mn patl8nts wlth mutations In a keygene InviAvod In the splicing proc888 IPRPF31). TW used thls mc*lel lo estsbllsh that tho mutated proleln 1$ found particularly In retinal pigment eprthelium (RPE). Tlw found that PRPF31 mutalions re(luce active spliceosomes aThl alter thè struclure of Ihe cell'8 SPI￿1ng mad)inery, vthich has a knod(-on effect on the spllclng needed to maintain normal stnthre and functlon of retinal cells and RPE. Thg team al80 dlscovered that affected RPE cells contaln large Clumps of proteln debris. The researthrs Inve8lWed how other genes, woteln8 and key (%llular pathways we Impacted by malfuncllonlng PRPF31. They found th81 several affected pathvrays are involve(l in woleln dogradatlon and w8Ste dlsposal. li86 in the dis¢ovwy of th8 protein clumps. RPE Calls play an Important fo￿ in recycling VA)rn ￿J1 p￿)t￿￿or ¢Ompry￿nts. so the team investigated whether dru98 thst help eliminatè debris Lxiuld be 8 Fxltenllal th6rapeubc approach and found that can r8pamyrin showed polenti81 in cultured RPE cells. This project has shtrj signifKant Ilght on S￿￿￿elatod disoase methanlsms aThJ highlighted potential therapeutic apyoa¢hes. Understandlng thg dl$•aso m•dbwbl•m• and d•v•loplng n•w th•raplM fr•r RDH12-r•l*•d Lgbgr ¢ong•nltst amauro818 Started 20181 Endod 2021 Prof Mwiya Moosaiee Iwj Ihks project at UCL Institute of Ophthalmoloyy and the Frarcis Cr Insulute. It aimed to Ir￿eaSe krth•Aedge of the mo1￿Ular basls of this type of LCA and accelerat8 d8velopment of an effective treatment. Durfng the oxrse of the prr4e< Prof Moosaiee generat&J cell li￿5 tranSf￿ted v￿th nomial and Mul*￿ RDH12 to show how genet￿ change5 impact prO￿n furth. and her team also generated pat￿nt-d8rI￿d retinal organoids. and develoF*d a ZeiYaf￿h disease model. The cell mcéels have been used to increase understanding of how faulty RDH12 cause5 disease and help the resear¢h8rs lo Identify approwiate drugs for testing. The zebrafish has demonstrated suitabilty as a model of late-onset retinal degenerat￿n, and will be available for fvrther expetimentats.on as required. Page9￿40 Ratina UK RoPQrt ol the Tn￿100* For th• year 31 D@c•mber 2021 The researchers delocled h*Jh levels of (*lul¥ stress in the RDH12 mutant C811 liws, $0 se*led three drugs for testing that have the atAlity to re(luce c&4ular stress. One of these. pregabalin, show&J promise whèn tested, and as thr4 ths in a mutalion-lndependent manner. rt V#ill now go on to be tested in retinal organoid$. T*t) olhw drugs ￿re sdected for their wlentlal to resto￿ RDH12 fUnCt￿n for some types of mutatM)n. with one, 3mlexanox. provlry SL￿¢￿ful in the cell lines. Natural •xon skipplng In ABCA4 MRNA and Ils modulatkm as a nov•1 g•n•rfc thowy for Stargardt dls•as• Started 2018 l Endod 2021 A PhD student suFervised by Dr Rob W J Cdlin at Radboud UnIV￿s[ty In The Netherlands has studied Ihe drrr•rent genetic mUlatK￿$ whth lead lo Stargar(ft dlsea88- a ma¢ular dystrophy whkh affects people from childhood and for ¥thi¢h thwe is no t)Jre. T1￿ project has been fund6d by Retlna UK in conjunction wllh the Ma￿lar Soc￿. StaTg•dt dSsease18 usually caused by mutsllons In the ABCA4 geno. Patients wth ts¥o severe variants of ABCA4 develop Slghl loss eady, as tho5r code only conl#irts ts inslrucuons to make hamrful ver5￿n8 of th8 proteln. Other peop48 wtth a comblnatlon of severe and mild mutatknns wodu¢e a mixture of harmful and rK)m)al wotelns arKI so tond lo avok1 8yThploms until later. In some peor46 with laler-onsel Stargardt. blts of the genellc code are mlstakanly'skipped"; so Ilke a recipe steps misslng. the resulllrKJ protein doesn't turn out Ilke It18 suppos￿ to. Thls project almed lo uThJerstand Iwjw and why s￿1n$ (exons) of the gene are 'skipped', and prevent the misreading of ts gene that ¢au8e8 damagiNJ Fxotekn v8r81on8 to b8 produced. Using human retinal speclmen8. the researchers have kleniffied var￿$ drfferenl f(Kms of ￿tered ABCM and have dlst))vered Ihal one of these, lackirvJ a sectlon krthvn as exon 15,18 the ¢ommon05t foryn that under9oe$ exon skipping. They also looked In more detail al tsK) pone reglons that might regulate exon sklpping. wh￿h enabl￿ them to d6sl9n lfve dffferenl mol8cukgr'patch&8' lanlisense oligonucieolhle. or AON) to ty lo block Ih8se regKxts and prevenl sklpplng. The8e AON8 produced mixed results ￿ le8led in HEK293T cells and healthy fibroblasts. Includlng w￿n the researchers tried dlfferent palr combinalwjns of AONS. ￿J1h￿gh on6 of the AONS dkl have some effkacy in Incroasing exon 15 relenlM, nor￿ of the AONS ￿lUc8d a signlfl¢anl Impa¢t. The researchers conduded that a greatw poc4 of AONS that (x)ver mcn of tho key gene regions need to t* tested. The 8tudentshlp has 8nabled a wom18tr￿ s¢i8nlisl to lay the f￿ndaltOn$ for a futyre carew inherfled slghl10s5 research. The Gen• T•am Prol•¢t Started 20111 End• 2023 This hlgh study has been led by Prof Robin Ai at the UCL Institute of Ophthalmology Since 2011; in 2020 Prof Ali and the team moved to lQng's College London to establish a Centre for Coll and Gene Therapy there. The wo1￿1 has iwi establishirvj the V￿lIty of gène therapy for rolinal disorders as a potent￿ treatment and has devebped a therapwtic pipdine for atloast 11 forms of early-onsel severe retinal dystrophw, makifWJ excellenl progress tovrdrds its aims. So far. the leam has inslyJated three esly phase dinThl trials and Is consld8rlng expansion of on& of these into a phase 3 trial. They have aso treated Sever￿ infants wilh a we fomi of LCA under a lo¢al 8P8clal Ikense. The team has amassed consKlerable gxperti80 in the devdopment of gèn8 therapy delivery systems (vectors) and are appI￿ng this to the pr￿lIn￿l development of a number of therap￿ for retir condilK)ns and rdaled syndromes. This indudes wyk on Ihe IMPG2 gene. modelling this particular type of rellnal dtsease in cells and stsrling lo assess the viabilty of an IMPG2 gene therapy vector. Page10of40 Rotlna UK R•port of th• TnMt• For the year WKllng 31 December 2021 Und•rsLvKling NR2E34rtlnal dI••a￿ pahways and id•ntifying th•r¥pwlk t8rg•ts Start•d 20201 Endad 2021 This proje¢t wa$ led by Prof Mariya K*)os4ee at UCL Ir*lilute of Ophlhakndogy and the Francis Crick Institute. The gene NR2E3 futhns in the ligM-sen$iNJ ¢ell$ (pholoreceptots) of the retina. We have two types crf photorec•plors, rcrfjs {which avj vis￿) in dim I￿h1 and detect movement in our P8npheral r￿d of vision) aThJ cones (of wa have 3 Subtypes red. green and blue and these control our fine det￿1 and colour vision). NR2E3 is &tive in early relinal development during pregnar￿Yl0 Signal more rods to devdop and suwess cone devèlopment (in Parti￿L￿r ￿en arKI blue cones) in a very Control￿ manner so we gel the corre(* proportK>n of l)oth in C•Nrect place. Mulations In NR2E3 causeg relinilis pigmentosa (RP). characterised by wogre$8lve bJ8s of rod8 followed by cones. 11 also causès enhanced S cone syrKlrome. where pat￿ts have irtreased gensiti*lty to blue Ilght, medU8led by the S {stK>rt wa¥der￿th. t￿￿8) cones. Thi5 projeLt aimed to Increase understsndlng of NR2E3 rellnal dbease by using a zebrafish m¢Jlel to stL*Jy the direct effects on cone and rod development. The Trsear¢h6rs Invest￿ated how disruption of NR2E3 8ffects olher genes In the relna In Nder lo klonllfy a potentlal treatment tsrget. Dev•lopm•nt of CRISPR g•n• th•f•Py for StW9ardl dl••a•• Startod 2020 1 End$ 2023 Thls PhD sluden15hlp, C￿lunded thth the ma¢￿ So¢6ety, is b￿￿Kd Sup￿lSed by Prof Robert MacLar8n at Oxford Unlversty. Stargardt dlsease Is a luvenile-on881 macular dystrophy, u¥ually Gau$ed by mutations in the ABCA4 gen8. ABCA415 a large gene, loo long to fft tr￿Ide vyal dèlivèry systems most c¢Jnmonly used for gen8 replacement therapy, and so requlres Inr￿vatiVe apwoa¢hés lo treatm&nl. This project wll InveslSgate the feaslblllty of ￿￿ng a CRISPR-based g8ne editing spy0￿h to correct faults in the genetlc code. In partI￿lar, the researchws WMI knk at edilir4J the inlefmedlwy genelic molecule kn￿vn as RNA, whlch exL818 only temporarlly Inskle thg c41 arxl potenllally provhjes 8 safer. mo 8xlble target than Its (xlglnal DMA bhwprlnt. The student made excellent progress durtrvJ the first ye8T of tho woie¢L ¢0￿fUllY $ele￿ing dinlcally- relevant ABCM mulatk)n8 to tsrgel. She has created plasmhds (sh￿1 strands of DNA) oontslning these mutsllons. and has then Inserted the ￿SMIdS into cultured human Cells IHEK293T ¢ells), whlch use the n￿Y Introduced ger*tic coje lo produce A8CA4 protein. These cdls cgn rthv be used lo test and opllmlse the CRISPR (xjnstructs the sludenl has desoned. 2021rd022 gr•nl round After a pa￿lemIC-related hiatus in 2020, Ihe tharity was d611ghted lo be able to open a c811 for new research grant applications in autumn 2021. Thi5 has rgsulted in strvtli51irKJ of six wjmtsing proposals. They include exciting prOj￿ts to investigale trootrnenl ap￿￿he9 that are either independent of the spectfic undedwng genetic cau$8 of sighl10s¥ or address a group of simdar genetic causes, offering hope lo a lwge proportion of the Rolina UK ￿￿hMunty. Meanwhile, one application considers the memters of our communty for ¥thom ger￿Tr¢ ts$tirKJ hag so far failed to return 8 result: the protM)sed project wDuld use advanced genom￿ analy¥i¥ to unearth those genetlc errors thal are very hard lo detect wth current (lIagnost￿ tgthnw4ues. Our Trustees ￿11 declde wh￿h projects to furKI a$ far as our finanual position allows, based on ¥ryenlific mefit and the recommendalK)ns of our Medical Advisory Board, in spring 2022. ommunlty •ngagem•nt wlth r•sea￿h 2021 saw Retina UK ¢onlinue its efforts to fa¢Trlilale ervJag8merrt bets￿en Mernb￿ of our communlty aThJ resear¢hers. We pu￿rry$ed Six ￿earch pwtiC4patK)n OPkK*rtunrti8s via scKk41 medk8 thannel$ e-newsletters, a$ well as dire¢Uy emailing L￿mMunity members vtho have exwessed a wish to take part in such a¢tivrties. Our resew¢h partI￿patiOn panel now Ir￿ud05 311 members. PartiCiP81ion has irK4uded irKlusty4ed activities to lewn more abrArt Ilved expwtence, and queslionnaire-based 3tudies on the impact of the par￿emIC on the wellbelrrfJ of people wth visual impairment. Interaction belween those livirvJ V•ith IRD and Ihe research cx¥nmunlty is 855entral for Page11 of40 R*ina UK R•port ol th• Tru6teo5 For th• year ondl 31 D•c•mb•r 2021 progress,. it 8lso wovides our c￿Munty with aL¥xrt pwticipatw. a￿1 opp￿UnIt18s to Influen￿ the dir•Xion of reswch. Bringlng Ir•atm•nts io th• ¢linl Securing roimbursement for new therapw essentsl flnal step in ona￿Sn9 those lfvlng with IRD to access Irf￿har￿jing treatsmwrt. In 2021. Retina UK contrik￿led to the NICE Pr¢￿$8 Rev￿ consultation and ¢￿tInueS to engagg vAth s￿tOr partners and the ph8miaceultGal irKlustry to ensure thal futu￿ therapies ¥e made availabb lo our community. Inforniatlon and support The delivery of our Infom)ation and Su￿ryt swvkos In 2021 Involved a real dbltal transfomallon. The UK was again subjected to numerous lockdovffl5 and thanges to COVID-19 guldance arKI as such, we adap￿j to focus on ways ￿ cO￿d reach those lfvirvJ *ith or affected by Inherlled skJht loss, as I￿11 as the rKofessional ojmmunty who support them, in a remote vrdy. The Inslghls provlded frcm I￿rking in this way during 2020 prob*d Invaluablo an(f allow8d u8 to expand our provlslon. In 2021, 762 new c¢￿taCts told u$ t￿Y wer8 happy us to stay kn louth. kncludlng 587 Indr¥idual8. 31 comp8ni88 136 cry8r48atbns. Conhr•n¢ Al the start of 2021 ￿ made the diflkull dedslon to move our Annual Corrference. AGM arKI Profe88lonal8' Conferènce fulty onli￿. Many of the ¥pg*er wesenlatk)n8 wwe film•J In adv81￿8 wth the Same 8P8aker8 b8lng available Ilve online for the Q8A sessions. Thi% prov￿1 to be eno￿•?U￿Y 8wce88ful,' more than 4LKI dglegale$ roglslered to attend the Annual Conlerence.. almost 200 registered for the Professionals, Conference. The Iherne for 2021 was geneti¢s and induded the I￿nth of our new Unk>ck GènetKS V**bsite. .1 have been o mgmb•rslnc8 1979 and I he￿ neverbe•n to 8 conleronce becau￿ of the dlst8nce and nol havlng antrvne Io 8ccomp8nyme Ih81 might be interested enough to attend the conference. Btrt th18 tlrne I was able to attend online 8rrtl I really enfvy8d ttand Ihought th• w08•ntatkn8 ￿re outstanding. The AGM votlng pro(x88 wa8 comrAeted In odvarKe th el1g1￿* members offer&1 the opportunlty to votè onli￿, in wrltlng {hard copy) or by tdephone to ensure a￿S1￿.1rty. The Ofline AGM offered membors the opthunty to 88k quesllons. We plan to offer a hybrld oplon for our conferences m 2022 ¥there those Ylsh to attend In person can th) 80 8rKJ those wtho are rK)t able to, w prefer not to. ￿ atteNI online. Unlock G•ngtlG• FollowirvJ our slghl1088 8urvey In 2019 we Identified that of the 1,0(M) peoplo wfK) resKM)nded. 43% said they were 'nol aware, of genetic testing or that they were 'aWa￿ of it but R Is not avallable to me.. We estimate 85% of our ￿MmUnty do rH)t wrendy have a dwnosls. Ow resww was to develop our inmvative U￿(￿k Gen8ULx resrwrces. The Unlock Gendcs V•*bsSle Vfds launched at our Annual and ProfessionaL8' Conferences In Arthl 2021 thanks to a grant from Novartls Ph￿8¢eUtICal$ UK. The site aims lo iwease the level of avrdreness of genetic testing and genetlc c(MJnselllng amongst people living 7Mth inherited 8ighl loss Lx)ndllions, empowering them to make ful￿ Infcrfmed d￿l$lOn$ about ther lives, heath¢a￿ and famlty planning. It provides clear. truS1*￿rthY and balar¢ed infmnation arKJ has been developed 7Mlh $lgniftsnt inwt from experts In tt)e aThl 81s0 tW Yh) Irve ￿ryth inherfted slght loss. The site has b8en FKomoted among81 cwr existing community arKI externaty, vrith appearan￿ on RNIB Connect Radio, BBC Radio 4 1nT￿jch a￿1 varkMJ$ Sect￿ yess. We sent hard coples of the resource to 296 eye Clin￿ and with F￿r￿S to glve to patlents and kyesenled al events includlng Page 12of 40 Rdlna UK Report of tho Tn For th• ondln 31 D•combor 2021 Ihe Edlnburgh Irtstittrte of GenetKS and Cancerfs 'Shining a ￿ht on Genetsc Eye COnd￿on8'. Sinc* launch. ￿ 5tte has h•J almost 20.(m pag9 views wryth visitors from arourMI Ihe ￿ld. Content 18 8vailablo in a number of Icffmats. "Congratulations to team lor bU￿dIng this excellent slte. l enJo)Yd lookn'ng O￿T it 8nd listenlng to t1￿ audio r8COrtlings, esp8cially of expgrnnces of havlng tssbng". A memlw of o communty "Thi8 18 8 bthanl resource that wrflmake a by differnnce to ouroxnmunty."A reth81 spe¢lalist W•blnarn We introdu￿1 a series of monthly b*I￿nar3 (onllne vla zo￿) In August 2021 wth a focus on research. These were very well received by tho88 livlng wllh Inhertted sight loss and the sxofesslorlals who support them. Recordlng6 of the TA*abinws mad? avallablè on our YouTube chanrd and our Podcwl channel (audio (mly}. Registered to 8ttend YouTube (lo dale pOd￿t (to dale - 2￿22) 78 De¢ 21.. Dr SaTrhxh Rohman- dinlc41 trials pr(￿8$8 Nov 21.. Micha81 Gi1￿18Y- Optogenelics Sept 21.. Roly Megaw Irfflammalion and rètinal degeroralion Aug 21.. Elena Plotter DNA and RNA b8se editing tools 104 178 57 45 51 131 'Ex6wlhnt qU81ty ￿P￿rier. F8ntath speakerand host. Vèry imprethp.. "As a layper8thry suffennp from RP and notan academic. I found the pres8ntatK)n ￿11-cOnStructed 8nd easy to follow.. Infonnatlon da Our Intenfjon w88 lo hold t*Y) fa¢¢-tfyfaco irrf￿mati0Tr dajs In 2021 coinciding Wth Sight Vlllago events. However. because of urwtainty around r85trictlons arKI Publ￿ confiderKe in visiting large vents, thided lo hold these events online. Our fir81 Irrformallon eveniThJ featured some of Northem Ireland's top mÈdi¢al. ophthalmic and h681thcaro profe8s1ond$ with pyesen1atk￿3 on ger￿t￿ping. inheritance pattems, Urlock Genetics and navigating towns arthy citw th sight lo$$. This was foll0b￿d on 13 Octot¢r wrth a similar inforniation evening ￿th 8 IIKUS on Wal88. These events %*re also recorded shared on our YouTube aThJ Podcast channels. Reg181wed YouTube Podcast (lo to attend (to date- date- 2r2f£2) 2r21221 76 47 51 Northem Ireland Wa18S 43 Pag8 13 of40 Rotina UK R•port of tho Tru8t••s For the year •ndlng 31 Decembor 2021 Podcart channol Our pc#l¢a5t channel on Anchor FM seen of 14.4% on 2020 vitth rn(￿e than 2,0(Ki Ir8ten8 in 2021. Our content is 8yndMxted across nlne F4aYomis, tknich inclwje Swtfy. Apple podcasts and Google podcasts. We have listen￿ ￿￿1&Y41d0. indudirvJ mcffe 20% from th8 USA. We vlll Inc4udo a retsrence to our tharitable 8laiu$ and encourage donalh)n6 from listenws in 2022 aThJ l)roa(Icast m￿e frequenlly. YouTubo ¢hann•l Our YouTube channel saw a mtye than 40% iThxease ¢)n 2020 with 3.300 ¥￿TS In 2021 an overall dlck lfvough rate (from impreS￿On6) of 5.7%. The average across that chan￿[ varb8$ greatly dèpeThdlng on the type of content t￿1 ￿￿Uld 6uggest that we are pwfomilrvJ sllghily hlgher than the avgrage g￿n of 44%. For our thartty. the YouTube audlenco is wimardy UK-based wlth 85% in the UK arKI 6.6% in the Unrted Stales (the next larg88t audiew). Look Forward and ￿￿*818ttarn Wa Gontlnue lo provitje ac￿rat9 and trust*￿rthY infomalw)n updates in a varw of accesslble fomats. through our regU￿r neW￿etterS vthiL* are availabfe in print (Look Forward only). W(*d. PDF and audlo formal (CD and momory 8￿ck>. Thanks to swnsorship 8ecur&l from Jan$sen. we vKre to conllnue vAth our planned 8ch&Jule of Look Forwar(l in 2021, publlshingll three tlmes durfrKJ tho yew. A total of 19,780 wiles of L¢)ok Fop*ard distributed and 25,536 ¢opbs of e Ne￿Ietter. We worked cdiaboratwy ¢)n content guesl feature8 from Tlwive. British Sport arKI RNIB In 2021 with an artlde from Guth Dogs planned In the first edilK)n of 2022. We also have introduced a regul8r guest Slot on apps whKh 18 ￿Itten by a low stsndlr*J $upp(xter d th& chanty who 1$ Ilvlng wKh RP. Lo¢•1 P••r Support We held 14 onllne I phone local peer 8UPP(xt meetlngs In 2021 for those INlTrJ In London, Scotland,Birmlroham and Somerset. More than 244 peOe Iregi8lered - 8 49% in(xease in allerKianrkn on 2020. The meetings were reCI)r￿ and shared with ￿0UP members who were not able to attend on the day. In recent months have 8harwJ kKal group meetlng recNdlry on YouTube In a dedlcaled pla￿18t Iryeviously they ￿re Shared Yia Google doc81. Attendance varled through the yaw. some groups more onllne Ihan otheryJ. We 8re gratoful to the volunteer8 o>tydinat8 ow km￿ grwp8. Hfrlpline Our phone and emall Hdplino and Talk aThl Supwl w4kes have exp0rfer￿ed a slgnlfkant Irhyease in demand. The additional data that V•* rerAive th￿x￿h ow 8wvke ￿￿¥￿Jers, WirK180r Tel￿)m. have glven 8 further insight Ihi8 year. Subject rns Induded: Dalty Uvlng - 39% ot callers had queries abwt daity living (Irmased from 24% last ywl. including ts)n¢erns al￿1 driving and haviro lo give up a 1k￿se.. wnployment querles, benefrts and Tnobllty Iraining. Emotlonal Support- 27% of cals required spwific emotM)nal suprxyt (In¢reased from 20% lasl year), 5% of people had been nevAy dkqgnosed. and ollws we struggling for many reasons mostty struggllrg %￿th a recent deter￿atIon. Page 14of40 R•tlna UK For th• y•ar •ndlng 31 D•c•mb•r 2021 Inforniatk>n about RPireUnal dystrophiM- 2VA of callers I￿kIl¥j fLY Informatknn atrKJut their retind dystrophy induding ssrynptoms. lo ask *thelher otlw ptrwe experienced a certain issue such as floaters or colwrs. to di8cuss cataracts and the consid8rations for th8se ing treated gfven their retinal dystrophy. quesoons to ask at app)intments etc. Re8earch and g•n•lle tMtln9- 18% of e4llw¥ wantod informalion about research, dinical trials genellc lests'ng and ￿n$¢l11r1g. This fyure has dropped in comparison to last year 125%) Helpline emails 2019 - 2021 Helpline calls 2019- 2021 70 350 250 40 2C(I 150 20 Ico io oi Q4 • 2019 • 2020 • 2021 • 2019 • 2020 • 2021 Of th088 r￿p￿ded to our 81K*t ry)8t41 queslkjnnake: 100% of people 8akl kny likoty or vwy Ilkely to Use the I￿lpI1ne agaln or recommend tt to someone else 100% fdt il was eltw Wpful or very helpful speakitvJ to s￿ner￿ 6180 lfvlng wlth an Inherlled rellnal dystrcphy °ExcelAgnt seNk8. the anS￿r was sp8clhc lo m8. Cono'se and rebvont. I was alw watefvl fv the speed of gethng back to me." "Thank you foryou 8￿your colh8gues tr such prompt and he￿*111 8dth?. I wlll certalnly b8 8bl8 k) do som8 rese?￿h now and make en in1￿Med dewion. Mony th8nks.' This ￿11 be reviewed in 2022 wilh a view to extendlThJ Ihe r￿h and Inueaslng the numb8r of volunteers and service users recerving supporL Volunteers Our volunteers have c4Nrtlnued lo support our th￿Ugh￿l th8 pand￿1¢. Their supwt 16 incredibly valualAe and allows us to deliver our servKes. Part￿l8￿Y for th8 helpline, from a 'lNed experience, perspethe. We are hugely gratefvl all th8y do. Vcdunteers remain engaged wth our bl-monthly online infornalion evenings and buddy supkx*rt groups. Initbalives set up during 2020. We we seeking feedbad( from our volunteers lo infrxm fuknre development. Page15of40 R•tlna UK Roport of th• Tru8toes For th• ar endlng 31 D¢cember 2021 Our voluntoer training M*ekend ahead In fa¢￿t￿f￿￿ September 2021. Totmcs discussed Induded emoI￿al wellbeing trainlrKd %*ith wesentth Arthur Ellis Mental Health Support. In 2022 we VAII furthw dwdop our Ind￿t￿n and tra￿Ing pn)gramme for volunte8rs. When asked for feedback. (rfour l*lpllno and talk and suppcrt voluntws tokl us fell VMII 8upry)rted by staff over tho past 15 mlyth. Wollbolng r•¥ourc•• We are %w)rking with Arthur Ellis FoUndatH￿ to develop innovatfve new wellbeiryJ resources for our mmunlty which plan to laUr￿h in July 2022 at our o)nferen¢es. We want to encourage conversations about th6 emot￿81, as Mll as prthal. impacts of Ir*￿Iled sight1088. We ￿111 also furthw dwdop our new vdunteer and staff *￿IbeIng modules to train our vdunloers lo te 'w8llbeing ¢hampA)ns'. Sactor collaboratlon We 8r8 proud to be a fourKllng member of th8 1*1 Charlty Sector partnership and our r￿St￿nshIp wllh other charities supporting Ilmxe Irwng with sight loss conllnue to &Yow. W8 regulaty Collaborate vllh our partners in a number of key areas indLKlin9'. mental health and wellbeing: Inslght 98th8rlng: Informalton sharin9.' access to lechnology: aww8n888 and canwgning. Fundralslng The ongoing impact of th8 eoronaviru¥ paThlemlc made 20218nother challenging year f( the charty. Our fundraL8lng SUCC￿ in 2020 meant that we no loryer eligible for many emerg￿rY COVID-19 funds, arKI tlwe was a slgnifa¢anl drop in our18gacy Income. However, ¢cffe Income streams hekl up weu. and our IrK<¥ne for 2021 w88 £1,239.135. Hlghllght8 In¢Fuded another Iwely su¢¢es8ful Blg Give Chrfslm88 ChaNènge, tdrfth £53,752 r8l$ed- the m081 vrn have ever ￿leYed IPYough this anwal match funding paign. We wero also ddlghted to see rec(Jvery beglnnlng in tt)ose areas m08t impacted by tho pandemk- namely community and events. mh in communty income irf 9% gr(hth In events IrKome of 43%. This InCI￿led the return of th8 m￿1 powlar r(￿1 r8(xs Irrjudlng the wx¥ld4enowned Virgln Money Lorthn Marathon. From BL8ckheath lo Ballymena, 27 supporterg completed 28.2 mlle8. recoiving their medab and raising £60.827 for Retina UK. Fmm 5ks to full marathorfj, virtual challervJes lo skyYJN8s and walks. IffeamRelinaUK ach amazlng Ihlngs. Atthough lockthown restrictions conllnued to limit oui cx>mmunitls ablllty to hold events arKJ fundraisiryJ activitie8, £12.750 was rar8ed by westg vtho h•J planned lo attend Jennife¢s Eye Ball, Hothilty to Seaview on the Isle of Wight ralsed a fantastic £5.269 and Worksop's Got Talent rounded off year with £7.046 raiwj on the n￿h¢ £6,941 of which was doubled through the Big GN6 Cth'stmas Challenge. We were able to secure funding for Iwo imFMXtant new proieGts- £17.599 for 8 sulle of online resources to support our community with ￿r menlal he*th and wdlbeing. due to be launched at our Annual Conference in 2022. and £14,0￿ lo repeal our Sight Loss Suryey and gather vital data lo info￿, eVKIer￿ and supwt wr work. &gnrfunt fundirvJ was also s8￿red towards medui researth- £110,850 from the UK Government COVID Medul Research Charity Support FuThJ. £100,(KX) from a donor lo complete a three-year woiect investigatirrfJ the IMPG2 gene. and AMT lo further RDH12 research. The Mac#Jl8r SOc￿ty ￿￿tributed £41.1(Ml tovrards our collatxjrative proith. Page 18 of40 Ratlna UK R•port of th• Trust•OS For the year endlng 31 DKwnb•r 2W21 We are $0 gratefvl to everyone who supported Rellna UK In 2021. With help, have been able lo continue deliwing vitsl Inftymatlon and suppx)rt during these challenging limes. and have not only malntalrkd f￿r investment in our current medical research proiect8, launched a call for new KYr4ects to b8 selected in sprirwj 2022. All fundraising in 2021 was carried out by Retina UKS in-1KM￿8 fundraising team arKI by supporters engaged in thelr ovm aclivil¢es in aid of the chty. Retina UK subscribes to the Fundratsing Regulat￿ and the Fundraising PreferOr￿ Servicti, is Ilcensed by the Gambling Commission. armj adheres to th& Code of Fundraising Pr**¢e a¥ %*tll as t We nol recelve any requests via Fundraising preferer￿ Service to cease rA)ntact th any of our supporters, and receNed rK> ¢¢mFAaints about our fundraising in 2021. We alm to fvndralse In a fair and transparent w8y, in line wilh our values. and we respect tho privacy of our dorKKs. Our w'va¢y r￿IKe is availabfe to vmv on our wBbsrie. We dMI rK)t rArry out any door.ttFdoor fvrKlraisirKJ ty cdd donor wiisitson thr,. Make judgments armg estimates Ihat are reasona1￿8 aThJ pNd8nl: State whether applicat4e accounting standards have b88n fdlowed. SUb￿t lo ary materfal departures disclos&J and explained in the financlal statements.. Propare the finarKial statements on t￿ goiw (x)ncern basls unle88 tt Is happroprtale to presume that the C￿lty will continue in operatlon. The Tru8te96 are re8ponslblo for keeplng propw accA)untlng rewd8 that dl8clo80 wllh rea8onabl accuracy at any time the financial FK>siiion of the charfty to enable Il*m to &nsure thal th8 financlal statements cOm￿Y wth the Charities Act 2011 and the Charities (AcrL)unts and Reports) Regulations 2(KJ8 and the provk8ions of the charity's constitution. Tlw are also responslble for safeguar¢Jlng assets of the chwlty and taklro reasonable 8leps fly the prevenlk)n and detec16on of fraud and other irregularrties. The Trustees are responsible for th8 maIntenar￿ and Inte￿ of the d)*ily arKI financial informatlon included on the charl￿$ website. Leglslalion In the United Klngdom govwnlw the proparallon and dlssemlnatbn of financial sLitements may differ from ￿gISlatIon In other lurf8dlclk)n8. Dr M Kirkup Chair 11 May2022 Page 19of 40 Independent AudIt0￿9 RoPOrt to th• Momb•r• of R•tlna UK For th• onding 31 Do¢￿ber 2021 Opinion We have audited the financial statefflents of Retina UK (the'charity) for Ihe period ended 31 December 2020 vthich c£smwi88 the Statement of FInancI￿ Adivibes, the Balance Sheet, the Cash Flow Statefflent and th8 r￿tets to the fina￿1 stsiwnents. irKgudiThJ a summary (* signlficant accounting policw. The flnancral reporbng framewyk that been apF4led In Ihelr rffeparatlon Is applkable law arKI Unlted TrQngdfJn ALXX)unUng StaTrJards, induding Firowal Reporting Slandard 102: the Financial Reporting Standard appticable in ts UK aThJ RewIj￿ of Ireknd {United Klngdom Generally Accepted I￿OUnting Pradice). In our opinion. the financial statements.. give a true and fair v*w of the State ofthe charity's affairs as at 31 December 2020 and of tts Incoming resour￿ and appllcatk)n of resources, f(Y the period then erKled., have b￿n wopedy prep¥ed In xcqydanc4 *ryth United KIngd￿n Genorally Actspted counting PraGtic•: arNI have been wepared In acxordance with the Nuinnents of fv Charltleb Ad 2011. Basls for oplnlon We conducted our audit in act4fdance *ith Intematlonal Standards on Auditing {UK) (ISAS (UK)) and appllcable law. Our responsibiltti8s uThJer those standards are further described In the Audilorf8 re6ponsibillties for the audit of the finan(aal statements Section of wr rewt. We affj Indepar￿ent crf the charity in a¢cordarKe wtth the ethKal requiiements that we relevant to our audit of the flnanclal slatemenls In the UK, t￿lUding the FRC'S Eth￿al Stsndard, and we have fuffilled our other ethical re6wrffjibi1it￿ in acc(rfdan￿ with these requirements. We bdieve thal the audli evidence have obtalned [6 Suffldent and 8ppropriale lo provido a ba6is for our opinlon. Concluslons relatlng to golng concern In audlling the finon¢o1 $tslem¢nts, wa h8V¢ 0)n¢1￿1¢d thal the TfUStoos' use of the going ¢on¢em ba818 of accounllng In Ihe wepar8Uon of tho finarthl Ststements Is apyofvte. B88ed on the work we have performeil. have not Idonllf*d any malerlal uncortainlies relallng to events or ¢ondttion$ that, indrvhjually or colwivety, may c4St signlfunl doubt on the chaty's ablltty to conllnue 88 a golrwJ ¢on¢em f￿ a period of at least Iwelve months from hthen Ihe flnanclal 8tat8ments we aulhorlsed for Issue. Our r88pon8lbllllles and the reSp￿sIbIlItIeS of the Tntstees vAth respxl to golro concem are d88crtbed In the relevant seclh)rn of Ihls ￿pOrt. Other information The other Infomalion LX)mprises ts irrfomiation included in the annual report other than the financial statements and our audrtorfs repcrtt ther¢on. Thè Trustees are responsiblè for the other informab'on contained wllhin the annual report. Our opni¢)n on the financial statements does not cover the other inf0m1at￿n arml we do not expr8s$ any fcffli of assurance condusron I￿r00n. Our reSP￿s1b11ty to re&J the other information and, in doing rJQ, ¢0[￿l￿Or W*￿ther the other irrfomation 1$ materially incortsislenl wlh the financial statements or our knrywledge obtained in tha COU￿ of the audit. or 0th8rnvise appears to be materially M￿￿tated. If we Njentsfy such material In￿nSIStenC1eS or apparent material misslalements. th* are required to deiermine v*hether this grves rise to a material mis8tatement in the finarrial 5talemenls themselves. If, based on the V*P have perfomed, we conclude thal there 15 a matorial misslalemonl of tfvs i)tlw irrfom)ation, vm rooured to report that fact. We have nothir¥J to rew)rt in this rggard. Page 20 of 40 Indop•nd•nt Auditoes Roport to tho hlwnbeTr of Rotlna UK For tho YOW ondlng 31 D•comb•r 2021 Matters on whlch we are requlred to report by exception We have nothlng to report in respe(* of the fdloMng mattefs in relatlon lo which the Charttles (Accounts and Rep￿ts1 Regulations 2008 require us to report to rf. in oplnlon.. Ihe Irrformalion given in the fina￿ $lalements Is Inconslslenl In any material res[￿￿ bwth the Trustees, reF#Ni'. or suffldent ￿)untIng reL￿rIS have Ml bèèn kep( the financial statements are not in agreemenl wllh the a¢cwnUng reccrfds; or we have not recerv&J all the inforniatim and explanatio￿ ￿ require for wr audit. Responslbilities of Trustees As explained more fully in the ststement of Tru¥tees' ￿spOnsIbIl￿S. the Trustees are responsible for the Preparat￿n of the fln8nci81 Statements and for belng sat15fled that they gTr￿ a true and fair view, and for such intemd control as the Trustees determ1￿ Is necessary to en8￿@ the preparatN)n of finan￿81 statements that are free from malerfd mlsstatement. ￿ether due to fraud or error. In prepwing the fln8rtisl statements, the Trustees are respons1t￿e for as8essiro the Cha￿ty,6 ablllty to continue 8$ a golng concern. discloslrvJ. as applICat￿e, matters related lo goirKJ concern and u$irKJ tt golng conwn ba818 of accounllng unless Ihe Trusle8s either intend lo cease operations, or have no reallstlc altemalive tmrt to do 80. Audltorfs responsibilities for the audlt of the financlal statements We have been appjinled as audllor under section 144 of Ch¥iti85 Act 2011 and report In a¢cord8ncé V#lth thè Art and rgthnt rewlallorn made or h8virKJ effKt troreunder. Our oblecllve8 are to obtsin rea80natye assuran¢e about whettw ￿ finandal statements a8 a whole e free from material mwlatement. V411etlw due to fraud or error, arvj to issue an audito￿8 report thal Include8 our opinion. Reasonable assuran￿ 18 8 high levd of assur3r￿e iMJt Is not a guaranto8 thal an audit fJ)ndu¢led in ac¢wdan¢e y￿th ISAS {UK> will aWayB detect a malerfal misstalemenl en It exlsls. Mlsslatements Can arise from fraud or 9￿0[ and are considered material rf, individually or in aggregate, they ¢oukl reasonably be exp￿10￿ to infiuence the econom￿ decisions of users taken on the ba818 of finarKlal statements. A further descn'pti)n of our responsibl1rt￿ is available on the Financ￿1 Rewbng Council's website at: http8Jfvhwi.fr¢.org.uklaudrtorsreswnsibilit%*. This de8criptK)n foms part of our auditorfs report. Extsnt to whoch the audlt was consldernd capable of detectlng irregularftlos, Includlng fraud Irfegul*itle6, including frdud, are instances of non-comF4tance with laws arKJ regulatlons. We de$lgn procedures in line wrth our responsibilitw. ouilined at)ove and on the Finan￿81 RepDrt¢ng Counal. web$lte. lo detect material mi8Stat8ments in respe(a d irre5wlaritl88. IndLMlirwJ fraud. We rtitaln and update our understanding of the entity, its activitles, its contrd envinnmant, and likgly future developments, incI￿ling in relation to the *al and regulatory fram6w)rk appli¢able and how the entty is comFAying Nmth that frame￿￿rk. Based on this urNlerstanding, we idenlfy and assass the risk¥ of material misstatement of the financial statements. Vthether du8 to fraud or error. design and perform audit kyocedures responsive to those risks. and obtain audit evKlerKe that is SLrfficient and appropriate to provide a basi8 for our opinion. This irKludes consKleralwJn of the risk of acts by the ontity ttr¥g1 vmre (x)ntrary to appticable arnl regulalTh$. includiry fraud. In r8¥ponse to the risk of rregulerities arKI non<K•mb•r 2021 1.499,561 523,781 2.024342 1,639,489 Page 23 of 40 R•tlna UK Balance Shoet Forthe •ndin 31 D￿rnber 2021 2020 FJXED A8SErs TaryiEAe fixed assets 13 7,650 Investments 14 275,7 244,121 T¢)tal flxad aM•ts 261.771 CURRENT ASSErs Debtors: Amcunts falling due within 1 15 9240 1,227,530 Cash at bank aKI In hgr 16 1,197,89) T¢Jtal curr•nt a••ots 1247.20 2,425,420 LIABILrriES Credltors: Amounts due *rythln 1 17 ($05, {1,037,702) N•t current us•ts 1,741,2 1,387.718 2,023 1,639,489 FUNDS Urne8tr1cled 1,499,S6 1,427,065 Reslrtcted 523,78 212.424 Total fund• 1023, 1,639,489 J Crookes Treasurer Dale.. 11 May 2022 Dr M lfjrkup Chair Date: 11 May 2022 Page 24 of 40 Rotlna UK For th• y•ar endln 31 DK•mb•r 2021 2020 Not Incom• for r•portlng p•rlod 3B3.855 Adlustments f￿. Depreciallon ch*ges Unrealised {gains) I losses on Investments Dlvldends and interest from invèstments Decrease l (increase) in debtors (Decrease) I Increase In uedritys Decrease in rant creditiys 13 14 3,466 16,279 15,226) (394,918) 74,461 (3,011 302.47A (81,10 15 17 17 N•t ca•h g•n•rthl In op•r•llng •(thlll 352.308 Ca•h flow• from Inv••tlng a(thldw: DfvKlends and Inlaresl from Investments Purchase of tsnglble fixed a68éts Dispojal of Investments 3,01, (2, 5,228 (6.996> 13 14 Ca•h Ilow• from Inv••Ung a¢llvltJ•• {1,7701 Chang• In ¢a•h and ¢a•h •qulval•nt• In th• y•ar 1242 350,538 Ca•h Ond ¢￿h •qulval•nts at 1 January 2021 16 1,197,8 847,352 Cash 8nd co8h •qulval•nts at 31 DKomb•r 2021 16 1,322,144 1.197,890 Page 25 of 40 Rotina UK Not•s lo th• AGGounts For th• year endlng 31 Decem￿r 2021 1. Lagal status of tho charity The charily18 a Charitable Incrned (kganlsation (CIO) registered in ErKJland and Wales. registered number 1153851. Th8 &ldress ol the registered is gwen in the refe￿ce and adminrstratlve details on page 2 of these flnanclal statements. Eath pays an annual subscriptlon. is entitlod to vote at the AGM, and has a duty to exercise hts or her powors as a membw of the CIO in the w8y he IY she decid85 In good faith woukj be most Ilkely to further purFh)ses of the CIO. If the CIO is wourKi up. ts members of the CIO have no liabilty to (xMtriLMJt8 to its assets and no pw$￿81 re8p)n51bllty for $6thirvJ Its debts 8no118bili￿. 2. Accounting Policios Bas1• of prnparfng th• flnanclal stat•m•nl• The ¢harty conslltules a public benefrt entty as defined by FRS 102. The flnarKlal ststements hava been wep8red In acu)rdance wlth th& Statement of Recommended Praclke.. A(xounllng and Reporting by Charllies weparlng th8ir accounts in ac￿rdance with th8 Flnandal Reporting S18nd8rd applkable In the UK and RepulAlc of IreLqnd {FRS 102) issued in Odober 2019. the Flnanclal Reporting Stsndard applicabie In the Vniied Kingdom and Republic of Ireland IFRS 102) and the Charlts'eB Act 2011. The fina￿￿1 Statements have been prepared to gNe a Irue and fa'rf view and have departed from the Chadties {A¢counts and Report81 Regukl￿ns 2008 only to the extent requlred to provide 8 'true 8nd fair vlew.. This departure has invofved follw'ng *M￿nting ar#J Reportr'ng by Charitles preparlng thelr a¢￿UnIS In a¢Gordanc* wlh the Flnan¢ial Reporting Stsndard aWicabl8 in the UK and Republlc of Ireland {FRS 102)188ued In Cktober 2019 rather than Accounting and Reportlng by Charftw: Statement of R￿QMMended Pra￿￿9 effective from 1 Aprll 2(X)5 vthich has $ln¢e been withdrawn. Tho Ilnan¢lal stalwnents have boen wepwed under the hlstorkal cost convontlon excyt vthere invgstmenl$ held as assets are held al m*kel vatue. The financial statements are prepared In £ stsdlng. whKh is the fU￿nal currency ol the charity. Monelary amounts in th050 fi￿ar￿la1 8tatement6 aro rounded lo the newest £. Golng conwn The acllorffj takon by the charity in resrM)nse to the challerwJo$ arl8lng from the COVIO-19 pandem1¢ have mlllgaled the level of ¢)ryJoing tsk. The TnJst8es are satlslled that thero we no materlal uncgrtalnties about the charitls abllty lo continue as a going concern. In¢om• JI income is reoJgni88d In the Statement of Financw Acli741th 01￿ the charity has entit￿ment to the funds,11 Is wobable that the in(xM70 wlll be re(%W and the amount ¢an bo measured rellably. Income from govwnmenl arKJ other wants Is recognisad V•lwb the charty has entitlement lo fund8. any pwlorm8nce ¢￿dItIonS attached to the grants have b88n met, it 15 probable that Ihe income vlll ￿ received. and the amount can be measur&l reliably. For legacles, entiuement i¥ taken as the earller of Ihe date on 71thich efjlher.. Ihe Charity aware that probate has been granted. the estatè has been finaltsed and rK>tific811on has been made by the executor{$) to the Trust that a distribul#?n wtll b8 made. cf when a dlstribulion is receNed from the estate. R￿elp1 of a legacy. in vthole or in pwL18 only considered w0bats￿ when the amount can b8 measured ￿liablY and the dwrity has been notified of the executorfs intention lo make a distributlon. Where legacies have begn rK)tif*d lo the charity, or Ihe clwity is WKdre of the grantlry of probate, armj the crllerk3 for incomg recognrti¢)n have not been met, then th8 legacy is treated as a conllngenl asset and dlsdosed rf material. Page 28 of 40 R¢tlna UK Not•s to th• Accounts For the year endlng 31 Do¢•mber 2021 Dfvldend8. donalicms and furKI ralslng r￿elpts we L*en lo income on a f￿alVed basis. MemLwship subsuipty'ons are alIL￿ated to irtome in the year to they rdate. Any funds raised but not mltted are accounted for apPro￿t￿Y within the balan(x sheet. Membership and other income receNed in advance is deferr&J until th8 criteria for irKThne recognition ar8 met Donat•d s•r¥lc The charity benefits from the donated time and w￿ceS of many indmdualy xrn$$ a wide ranp of roles. The8e are not nornally actounted for as it ts not practitable to attrilxrte a value. Whore 8ervlces are d￿ated, a￿1 a reliable estimate of the Cost can be made, this is indudwj as (hJrJaled income 8nd as exwndllure uThJer the appropriate h8ading$. Int•r•8t r•c¢lv•bl• Interest on funds held on deposit is induded when receivabb arKI ￿ amount can bo measured reliably by the charity, this is rwmally upon notification of the interest paid or payablg by the Bank. Exp•ndlturn Liabiliti88 are recognised as ex[￿ril￿e as soon 88 there ro a legal ￿ construcllve obllgalh)n commltung the charity lo that expenditure, it is wobablo that 8 transfer of economk b8neffts wlll be requlred In settlwnent and the amwnt of the obligath'on can b8 measured reliably. Expendlture is accounted for on an accruals basis and has been das$W urrtler hea(11ngs that aggregate all Costs related to the catewry. Whwe costs cannot be dtrectty altrlbuted to parth%lar headings they have been alltxaled to activfties on a basis consistent wth the ug8 of resources as set out In the notes to the finan¢lal statements. Irr•(xMrntAe VAT19 tharg8d agalrtst ￿ ¢atewy of expendlture expended for whkh 6118 lTh%rred. Grant8 Grants payable are accounted for on an accruals basls The ¢hariVs wlky on re8e8rch Is to Ilmtt grant lundlng commitrnen18 to one year. Subj8¢t to 8 $atlsfadory of ￿￿0g￿88 and fund8 being avollable, grants are then apwoved for fundro on a yew4o•ywr basb8. Allo¢atlon of 8upport ¢o•ts Support costs are those functbn8 that assl$l the of ch*lty tArt do not dIT￿Y undèrtake charitsble activ¢titi8. SupFQrt cos18 indude offth cogts, finarw, porsonnel, pByrdl and govemance osts whlch support the chaitls proje¢ts, Fwammes activ[t￿. These costs have been IloGated befv￿en the categories of exponditwe on th￿'tal￿9 xtivltie8. The base8 on whlch support Costs have been althated are set out in the notes to the financlal stalements and the V+ElghIl￿￿8 revlewed on an annu81 basis. Invo•tsn•nts Investments are Inlllally measured 81 transactlon fv exdudlng transactlon costs. and are subsequenlty measured at fair value at each reporting dale. Tr8nsacllon costs are expensed as Incurred. Gains or losses aiising on revaluation or d￿pOsal of Inveslments are rec(*Jnised In Ihe Statement of FinancAal Activilie5 in the porknd to they relale. Tanglble flx•d au•ts Indlvidual r￿ed assets costing £SJ) or more are Ca￿lIS8d at C081 and are deprecMted over their estimated useful economK lives. Cost18 defined as purchase C￿1 less any resKlual value. Depreciatson is Ey￿ed for on all tsngibl8 ￿ed a88ets {ollke ￿uIpMent) at a rate of 33% straight line. Net took values are regulafty revIe￿￿d by the Trustee5 and any approwiate adjustments are made to carrying values. Page 27 of 40 R•tlna UK Nolos to th• Accounts For Iho y•ar ondl 31 Docomb¢r 2021 Flnaneial In•lrum•nts Flnaneial aM•ts Basic finarKial assets, inc4uthg trade and othw debtors arKJ Cash arxl bank balances are Inltlally r6cx)gnised at th8 tran$a¢tion At the end of e￿h repwung F*rfod financial assets ￿ assess￿1 for impairment a￿1 any impoirment Ioss i8 fec4)gn¢sed in the Stslement of Finanual ActNitleg. Financial assets ar8 derecognised ￿ either the conlra¢bA nghts to the ca8h flow¥ from the ass61 expire or are settled. Flnanclal Iwjilltl Basic fina￿la1 liabilities irKluding trade aThJ other creditors are initially reo)gni8ed al transactk)n pric*. Trade creditors are 01￿￿311c￿S lo pay for goods and serlkes that have been aryulred In the ordinwy course of business from suppliers. Trade u&Jilors are dasstfied as curmnl IK?bAttle5 W payment is due within one year or less. Financial lIa￿litieS are derecognlsed when the liablllty l¥ extlrvJu15hed, that i8 when the contractual oblvJation Is dk8charged. car￿lled or expffe8. Ca•h at b•nk and In hand Cash al bank and in haThJ cash aThl twm hbgNy l*uld Investments wlth a Short maturfty of thr•e months or less from tho date d a￿ulsit￿￿ or openlng of the deF•)8k or 81mllar account. Taxatlon The charty Ss exempl from tax on irKome galn¥ tslllrwJ wthin section 505 of the Taxes Act 1988 or section 256 of the Taxation of Chargeable Galns Act 1992 to tt19 extent that these are ap￿18￿ to Ils ch8r6table objects. P•n•lon co•ts The charity contrfbules towards personal perffjion plans for employees. The co81 of these cOntr1￿￿On8 is a¢¢ounlad for as a defined contr1t￿tI)n and is Ir￿dad on an accruals ba818. FuF)d ac¢ountlng Unre8lrlcled genaral lund8- those are fvrmls Ththlch c￿ bo u80d In accc*danco TMlh Ihe charftablo obfvcls al the dS3cr¢Jon of the Trustees. DesYJnaled fvnds represent monles alk)cated by tt Trustees lo specln¢ ¢harilable obio¢lOves or woj•¢ls, notabty txrt ￿ Ilmltod to th8 future commllment lo medlcal research proJKts. Re8trktsd funds- the88 we furnls that can only be used for pwucular reslrthj purpos8s the obJKl$ of the charity. Re5trKaions arise when Spe￿rth by th8 donor fuThJs are ralsed for parU¢uLv re8tr1cted purposes. Further explanakn of the nature and purpose of ea¢h fvrKI is ir￿luded In tho nol88 to the fSnandal 8tatem6nts. Opor*lng lea808 Ronlal charggs under op8rallng lea¥es are chwged to th8 SOFA ¢)n a 8tralght line ba85s over Ihe tom of the lease. Page 28 of 40 Rotlna UK Not•s to the Accounts For ts y•ar •nding 31 D•cemb•r 2021 3. Donations and Legacies 2021 2020 Membership subs¢dptlonsldonab'ons Individual donatior Trusts CcffpLYate Legacleslln mem(xlam FundraisirvJ Prize drawlapp8aWma￿ings GfftAld 31,422 287,171 125.514 99,042 219.531 159.275 80.843 47.999 33.922 201,￿5 264.494 129.151 1.095,391 134.381 98,377 41.829 Total 4. Grants 2021 2020 Medlc81 research lundlrKJ Government 9ranls 41,100 144,228 48,680 75,138 T¥)tal 186,328 123,818 Government grants c<>mpri#e amounts kn re8pe¢t of the Coronavlru$ Job Retention Scheme I'CJRS,) £33,37812020'. £75,138) and fr. Page 31 of 40 R•tina UK Nolos lo the A¢¢ounts For tho ondlng 31 D￿mber 2021 10. Analysis of support costs Fundrnl8lrwJ Inforniotk)n & Support BaslB of apportlonm•nt Olnce admlnlslratbn Remunerat￿n 77,218 555. 23.165 179.429 12.521 7,722 46,331 321.152 25.042 Staff time or actual Staff time or actual Staff time LY actual Governance 41.737 4.174 Totsl 674,824 215,115 67,184 392,525 Governance costs in 2020 42,613 12,784 4,261 25.568 11. Staff numbers and costs 2021 2020 Wages 8nd $alarl88 Social Security costs Pon￿on C￿18 531,264 42,073 16,180 516.480 48,281 15,511 Total 589,517 580.272 The number of per80ns em￿0￿ by the th¥lty durlng the 19 (2020- 20). Total remunerallcm lirdudirvJ EMrA0￿ NICI for kay man•36ment p8rsonr*l in tho wa8 £86,25812020 - £87,056). The number of employees wlth rwnuneralion (oxduding Employw NIC) between £70.(KJO480,000 was 1 (2020 - 1). Page 32 of 40 Retlna UK Forth? ar ¢ndln 31 D•comb•r 2021 12. Comparative inforniation for Statement of Financial Activities Unro8trlctod R•otrlclgd Total Fund• Funds Fund• 2020 INCOME FROM: Donations & legacies Charitable actNIt Gr8nls Inve8lments 1,542,474 456,976 1,999,450 75.138 5.226 123,818 5326 Total In¢om• 1,PJ22.838 505,656 2,128,494 EXPENDITURE ON: RaisSng funds Charr(able activil MedKal rese8rch 202.636 45,310 247,946 126.873 483,246 610,119 Inftymatlon 8 Suppcrt 276.291 184,411 460,702 Total •xp•ndftur• 605,800 712,967 1,318,767 Net108ses on Investments 116.279) {16279) N•t mov•m•nt In fund• 1.IMX).759 (207.311) 791448 Funds at 1 Januwy 2020 428.306 419.735 844041 Fund• at 31 D•¢•mb•r 2020 1A27,066 212,424 1,639,489 Page 33 of40 R•tina UK Noto8 to th• A¢wunts For the y•ar •ndln 31 D•e•mb•r 2021 13. Tangibla fixed assets Equipmont Cost At 1 January 2021 Addltior 20,230 2,363 At 31 D•c•rnb•r 2021 At 1 January 2021 Charge for 12,580 3,677 At 31 D•wnbor 2021 N•t book valu• At 31 DK•mb•r 2021 Al 31 December 2020 14. Inv•8tmonts 2021 2020 Al 1 January 2021 DIsp05als Unre81I8ed galns l (1088e8) 244,121 (113) 31,734 280,400 {16,279) A• at 31 D•c•rn￿r 2021 2021 2020 Included wthin invg¥tmenls are the follo4*lrvJ: CAF balanced growth fund at valuation Shares in Taykn Woodrow 3% Cty of LNwpool stock 27S467 275 243,733 275 113 All investments are held in th8 UK. Page 34 of 40 Retina UK Not85 to th• Accourrts For tho ar ondln 31 DK•mb•r 2021 15. Debtors: Amounts falling due within one year 2021 2020 ALvued income Trade débtors PrepayTnents 836,351 63,545 25,163 1,187,828 28,205 11,497 Total 1227 530 16. Analysis of cash and cash equivalents 2021 2020 Cash at bank and in h8Th1 1.322,144 1.197,890 Total 1 197890 17. Crodltors: Amounts falllng due wlthln ono yoar 2021 2020 Tr&Je creditors Tax and social securlty A¢¢rual6 and delerred Income Grant Ilabillty Other creditors 44,082 13,261 125,101 12,926 8,950 888,483 2,242 437,825 3,171 Totsl 1037 702 18. Contlngent assets & Ilabllltles There18 a contlrvJent Ilablllty of £343.775 at 31 D￿ffiber 2021 (2020- £327.0491 In re8peci of research grants aulhor18ed subject lo annual re7dew. Thls money fall8 dug In years 2022 onwards. 19. Financial commitments 2021 2020 Totsl future minimum base paymwts UDdw nOn￿ncelIa1￿8 operating lea50s are as fdlows: <1 year 1-Syears 13.500 47,250 13,500 60,750 Page 35 of 40 Retlna UK Notes to th• Accounts For th• r endl 31 Dec4mb•r 2021 20. Unrestrlcted Funds D•signat•d Ro*oarch Fund Totsl Unr￿trICtOd Funds Fund B8lan¢e al 1 January 2021 Income Expendlture Transfer befvrten funds Uryealtsed galn ¢)n inve8tm8rt 1.120.065 644.107 {581.￿) {4.451 > 31,734 307,(KX) 1M27,065 644,107 (803,345) {41.439) 4,451 31,734 Bal•n¢• at 31 Da¢￿b•1 2021 270 012 Deslgnaled Research Fund.. Th18 general unreslrthj fund h38 boen d88ignaled for medlcal research by Trustses In v18w of tha contwynl Ilablllles In resm of grant exp8fKliture. 21. Comparatlvo Inforniatlon of Unr•strl¢ted Funds movement at 31 December 2020 D•8lgn•t•d Ro•••rch Fund Total Unr••trlct•d Funds G•n•rnl Fund Balane4 al 1 January 2020 Income Expendlture Transfer bet￿en funds Unreallsed loss on investmwrt 280,550 1.622,838 (531,4651 1235.579} 116.279) 145,756 426,306 1,622,838 {605,800} (74.335) 235,579 {18.279> Balance at 31 De¢￿b￿ 2020 1427 065 Page 36 of 40 Retlna UK Notes to tho Accounts For th• y¢ar •ndlng 31 December 2021 23. Analysis of net assets between funds Tanglble Flx•d Flx•d Current Curr•nt Ass•ts InvMtmth)ts A8uts Llabllttl Re8tricted Fund5 Unrestrlcled Funds 821,486 27S,742 1,425,717 1297,705) (208,234) 523.781 1.499,561 24. Comparatlve analysls of net assets between funds 2020 Tanglbl• Flx•d Curr•nt Curr•nt As••t• Inv••tm•nt A••ets Llabllttl•• Total Re8tricted Fund8 Unreslrthd FurK18 730.842 <518,418) 244,121 1.694.578 {519,284) 212.424 1.427,065 244 121 2 425 420 1037 702 Page 39 of 40 Retlna UK to thg Accounts For th• y￿r endin 31 DoG•mber 2021 25. Grants awarded Instltution Grant Hold•r Amount Radboud UMC. The Netherlarmjs Oxfrxd Univer8ity Dr R Collln GR599 Prof R Ma¢Laren 43.750 39,524 Total 83.274 Adjustments on comKletion of grani woieras {78.89)1 Openlng Cr￿lItOr for grant c(Thmknient Grant payments (452,2281 Adlustrnenl on grant rebate on prw eMiplet {3,014) Clo•lng cr•dllor for grant ¢ommltm•nl 26. R•latod party transactlons There are no related poty tran8actTh$ Tewlrfng dlsdosure in the Flnan¢lal Statements (2020- none) 0th8r than those relating to Trustees, expenses in nots 9. Pago 40 of 40