2022-10-31-accounts

The Neurofibromatosis Association Report of the Board of Trustees Year ended 31 October 2022 Charity Registration Number 1078790 Scottish Charity Registration Number SC045051 Company Registration Number 03798407

The N•urofibromatosis Association Report and flnancial statements Year ended 31 October 2022 Charty Name". Charity Registrati￿ N￿Mber. 10787 Company Registration Nuntr. Charity Name.. 3798407 Nerve Tun￿￿￿3 UK Registered office and TeWon& Fax.. E-mail address.. 020 8439 1234 020 8439 1200 Nerve Tumows UK Nerye Tumours UK is Ihe name ofthe charity. retains ils legal name Tr NeurofitK(￿aI0sIS Association.. Board of Tnffjtg8S The Current Board OfT￿￿ is: Michael Fry (Chairl Dr. fimthy Com Emity (J4pn Richard Goode IWKe Ch&) Professor Rosalie Femer Jonathan BTU Rohan Chanmwam Professor Meena Upadhyaya Matthew Jones Sonior Managomont Petsornel Karen C￿kbum. Ch*ity Direcl(Y Gillian Andersc Sinx)n Callow A￿llIorS 1 Park Road HamFthI Wv lfjngston. uFth- Thames Surrey Kf14AS &Jr KT1 1VX

The Neurofibromatosis Association Report and financial statements Year ended 31 October 2022 Board of Trustees Report for the Year Ended 31 Octobw 2022 The Trustees are pteased to presenttheir annual rewt aTrJ f￿a￿la1 Statem￿ for the Y￿ ended 31 October 2022. The financi￿ slatemerts conwty with the Chanties Act 2011, Ihe Companies Act 20(￿. TTr￿1ee lllvestrnent {Swlland} Act 2005, the charities Accwnts {ScoUafKJ) Re￿￿alK￿￿ 2(￿)6 las amended). the Memorandum and Ath"cles of AssLKiation. and Charibes Statement of R￿0MMer￿ed Pracbo fchanbes SORP°} lapplicabte to charfaes preparing ther accounts in aCco￿anCe with the Fir¢ncial Reportiry Slarxl¥d appjrtde in the UK and Republic of Ireland. FRS 102) effethe from l janu￿ 2019. Objectlves and Activities The charity's vlsK)n improve the lives of those affecte(J by N￿rofit￿￿￿o5Is". To alluw the chanty to deliver this Vi9￿ of helprw to impTo%e the oflhose affected by Neurofibromalosis (NF). and in betrJ ￿ntral to mth.ng this hapFen. we in ilh the Hbty SFeuali5ed Commissroning Semces, for￿￿ty the National CoTh¥ni%sthmg INCG) furthl sewr£. ots asscxiaipd IT￿1 professtonal UnFts around the UK. The missb)n for the charity is to'Enable people co￿eMed about Neuroflxomatosis to fiNI solubons appropriate to delemiination to seNe, sw and celetrte the lives of people impaded by the condiiThi. and t1￿￿ wwjer support ne￿ork. endeavours to.. Vle wovkle acarate, FelwanL and ￿ to date inft)r￿th that explains the condibons of NFI and NF2, the imFAK8ti"iy)s. challenges arKI oprJbthit￿5, in language un(krstood by Ad¥lge will campawn charyge ¥1 ¥eas televe ryn)ve Ihe lives of those affected by NeurofibrOmat￿s. Fund We make fuE¥ts avai￿le for small to t￿)d￿S patient group5 where befieve it will make a difference. Pat￿ts a￿1 eArers Families ￿ryth newofibr0r￿oS1s The medKal community NF Specialist NelvKxk of Nurses •Kt Adviso

The Neurofibromatosis Association Report and financial statements Year ended 31 October 2022 Vdunteers Achiwements and Performance Athough hindered by the ongoing ￿rercUssIonS of the C(Nt&19 pandeTrriC ovw last fttv year5. the charity has continued to COn￿ntrate on ts ￿ntral five Ser￿ agaÈn this year. The pandemic did not detract from YK>rking to strengthen and develop our core support stnKlures to ensu￿ that we could continue to provKle the best possible support and ￿f0mlat￿Jn to anyone affeded by NF. However, our seThices continue lo face increased demand. This is due lo the uncertw"n economic C￿mate an¢J the ￿￿NIng atsen￿ ￿ dIffiCL￿ in obtaining FYKYhary and secondary telephone consultation. As a resutt of this owoing situakn ￿ the V+ider care sector. Ihe thrity tcdt the decision to ewd the National Neurofibromatosis Helpline Se￿l¢e frc¥n I￿ to11Yee days per￿ek. Impact rf Covid.19 on Charlty Services & Finances important for people dragnosed vthii NF and tr&r carer5. Many people wth NF are vulnerable an¢J often isoLed. Our experience is that many are diwessed by the oThJoing health crisis. as some of their complirations may make them more susceptible to COVN￿l9. Kqany still have to shield. The effect on the broader gr￿P of people wrth NF continues. as there is 8 Sign[￿nt backJ(vJ of appothents for genet￿￿ ￿ nwrow dinrA. TtrM"s VAS caus&J ty reduced NHS staffing. many ofvknom had bew reAeFAoyed lo ¢rtial aThJ CovK￿l9 ser¥ices. In response. the charity continued to provtde ar￿ ￿0W services to tytsure that ￿ wild Cc￿tr"nUe to re&h and support (Kjr beneficiaries. In paiticular, the charty is c(yicemed about the onwing poteniial impact on mental health both for o beneficiaries and cyJr staff. As the chanty does not [￿e1Ve staiuiory ￿ kxal funth"ng, the bulk ofthe chartty's income has from charitab giving and monEs ratsed fr(Mn events. For a th￿d year. mary events were either poStp￿d or ￿nCelled, thich has again had a $ignfficant adverse effed on th¢)se income streams. Hrmever, we conlinue to frJndraK8e as much as As we fund a netsYwk of Spetiabst NF Nurses and Advis(￿ (SFoai5t A¢fviw). our wutres us to maintain a minimum of 12 months of reserves. Tr charity contsnues to rext qUI￿Y to Ihe constraints ofthe pandemic and the resultant economic clirnate. This has minÈmised the imp￿ on the level of reserves over the last few financial years. At this time, 7Ae are corffidenl that are able lo con1X￿ to maintan ¢Jur ￿eS policy. Plans for Future Sustsinablllty The pandemic and current econom￿ c￿e f￿Ced us to reconshkn ow slrgic plan. The Board implemented a strategy group to look at Ikny can conbnue to Prn¥￿ our services. in a pOst-Cov￿ world and recessionary economsc environmenL Key Strategic Aims: To increase awareness and understsndrkg of Neurofibromatosis. To pro￿de timety and meanWI SUFWrt and gludan￿ lo ttKGe living Neurofibromknis and the￿￿rider support netsY￿k. To promote and support ￿Search into Neurofibromsi$.

The Neurofibromatosls Association Report and financial ststements Year ended 31 October 2022 Our focJJs conb'nues to be on how ￿ can streamline our seThw, ￿thInate our rJrk tplith partners and improve the education of the medical profession. Our aiFn is to ensu￿ that peO￿e ¥e able lo a￿$ advice and support as effecbvely and effi￿nty as ￿ssib￿, vthether or not that 15 fffjm the ¢￿Tty. online services are not p¥al all (for ex8m. Fiatths wilh c(Jnthve 1mpaffM￿ and ￿rnIng issues}. can see that imwoved online conn&thvrty and fanwjianty Ws trj raluced delivery costs and wter eftiency. In the future our intention is that a balance of Onl￿ and in person delNery wll allow the charity to services to more pecwe. Specialist Advisors ¢an M>rk with the NHS to make joint aFf0th￿. The charity currenyy ftjnds a netyth oftfve SpecHlist Advisors across the UK supporbTra p)sts in Newcastle 12). Bimiingham {2). PPymuth, Livts￿, South￿P￿1. Shthkj. Leets. W, Scotlarnl Northem Ireland. advice and connects pecyle affecied by NF vAth relevani wactThl either in Ihew cwynuruty. iy in clinK. We aim to introduce tsvo new posts during the next financial year in pts of the UK there has never been any regional support Each F#)St supports betsEen 150- 3,3W pat￿nts per yearworking via diniGS, home visits, The role (rf Specialtst Attrfis￿s i8 very thverse. ￿ have haj excellent feedb￿ from the farrllltes $4WPOrted by our Specialist Advisors. It is plain to see th8t ltr￿ fam￿ts. the supwl frrmn the ¢tharity and o Specialist Adwsors 15 pNotsI in helping them to cope ilti NF. Speualist AdVisC￿ netrAryk VAI continue to be a key rijle for Ne￿e Tumours UK. er 60% of patients wrth NF1 have leamirKJ difficulties. aThl approximatety 30% are regiSte￿d as disabled, as are 75% ofthose patients ￿ryth NF2. Huwever. pubfr a￿areT￿ of NF is ItyAf. Our eXper]er￿ is that thi5 can lead lo schoo15' th550ry servtce, iNFomi. staffed by our SFeuatist Athrysots. Vthere er￿ged. the team work5 closely vlilh teachers. Supporting tsilored learning plans, 8nd Slwestirg methanM)s for enhancing Ihe child's experience at school. Even during the pandemtc. we have that The can stll operate iNFonn eff￿tiV￿y. albeit virtu41y. Nerve TwrK)uts UK corrtinues to offer • exlensNe rar￿ offrterature lrrfoF￿th. for lay people arwj professh)na15. Our literature is used by medtsl teans xrDSS Ihe oyyJnty. Our Wets th pamphlets subj.ect to c￿Stant ￿1￿1¥ and UFthte. MedKal vofessi￿ are also to {￿e the N￿Ve Tumwrs UK national helpline. The Nerve Tumours UK Head Office leam continue to w)rk exwts(rtialty hard. They con"nue to go alx)ve and beyond in response to the ¢￿bnu￿ry falknrt frc¥n the pandwni¢. and the Boarf are once again very gratefvl for the efforts. Key have induded the furilw de¥ewn￿ Ebsite, in Part￿Ularthe Sections on partr charilies, menlal heatth. the cost-of4iving and research. A w"medi¢s onty" sth ofthe website is due to be launched in Swing 2023. INe hope that wnwoves and wthns engagement with medul professionals. parti¢ularty GP'S. In￿easIng vi￿ts to ourTAfbsite. This has gready inwsed and Ihe support can prowde to Ihe communtty. Facebook coveraje and erwjagement has cuthiued lo w. I￿￿73.800 peO￿e are reached organKalty each month and our page vtVoVS are up by 3.2% year on year. ￿bSite achieves an average of 53.000 users per month, ith 58,328 in Decemtsf 2022 dor￿. Nerve Tumours UK'S T￿er re&h c¢)ntsnues to grow steadily wtth 1,594 follLywers. Our h•Rets make an average of 319.OCiI impressi￿$ per morrth. Our Instsgram reach is akn increa5irYJ. ￿ ¥￿ 1.912 follry&ws.

The Neurofibromatosis Association Report and financial statements Yoar ended 31 October 2022 The number of ￿JbscrlbeFs to the NeThe Tumours UK newsletter has iTrxea5ed to 4.148. an increase of 36% thi8 year. We continue our memt￿Ship of a nUMt￿ of other soc4al arKI marketing trfanches such as Meetup groups, which drrecty target our thallerwJe everts outside the c(xnmuntty. At 189 members. y￿ are reaching a Nvider audi&Ke than tth. On Wortd NF Awaren￿ Day in May 2022 kntal g)oal rtwffia on resp#t¥e NF1 and NF2 Days led to the hlqhest peak ot aclNths ax6S 9)iai me(tia •Kt the web th year. We also continue to seek to tsvdop and strengkn our pathuthips ¥Ath 0rganlsabc￿S K￿1￿J1ng The Centre for Appearance Research. The Genetic Allia￿. The Neurolog￿￿1 Allian￿. Genetic Disorders UK and Embracing Comple￿ty. We have started pknning confaences outreach in 2023. There are no immediate ￿n¥￿la1 cor￿ems. althwh the ￿)non￿¢ dimate is of concern. Nerve TumouTS UK is stlll currently on tr&k lo meet rts long-term financ4al targets. dedication of the Srecdist AthF￿r$. ow nEnkn, slaff and Medvl AthFSW Board during PLrt into the charty. Structure, Governance and Management Nerve Tumours UK is a Charttable Compary, lirTMted ty giarantr, on 30 June 1999, and registernl as a charity on 5th January 2000 {prevM)usty 284653 registered 1982) with a W￿Mbership base. The company was estaNished under a Memorandum of AS￿￿31]c￿. estsbjished the otyects and POknEf5 ofthe d)aTitsble company and is govern￿ under its Arttdes ofAssociation. In the event of the corrpany being wound up members The directors ofthe company are also dwity Tnjstees WFFrf>ses ofctsity law. and Lo¥ler the compan￿$ Articles are krM)wn as members of Ihe Board of Truslees. The Boar(t of Trustees meets at least four ts'mes a year and is reSr#￿ibIe for Ihe strategic direction and ￿1￿Y of the chwity and appoFnb"ng audtt(¥s to ernsure financFal compliance. MedKal input is given via our MedKal Ath1￿Y Bo¥d, a rewesentstive sits on the Board of Trustees. Medi&il &Kkground The charrty's membership ts mosty dran from famiffj es affthd by NF. Th￿E are tm) types of NF. NF1 affeLts 1 in every 2,500 people world4Mde, Vthith means th there are rn0￿ than 25,000 in the UK; NF2 is much rarer, with 1 in 35,000 affected wD￿d￿de {1,000 in the UK}. An affecknl person of either sex Iw a 1 In 2 {50'.50} chance of passing the altered (abnOM￿l) gene on to thety children. Hcfw￿er, every¢J)e has a risk of having an affected child because 50% of those aifected by NF are tr fwst p￿$(￿ in thewfan to be so affedej. people NF1 only having skin involvemen( but potwrfial complution5 incEude." specific leaming difficulttes and behavioural problems- which affecls about 60% of all wih NF1', high bjood pressu￿ {hypertensionl', curvature of the spine Iscoltosis): malformation of the l¢yvJ trx)nes (belcw the krtee antl bek)w the elbow) {pseudarthrosis).' large benign skwi knmours (Fdexrform n￿O(￿OmaS). trJrr￿rS on the rwves of sight (opt glioma).. intemal. spinal aThJ brain knmouts- tKh arE US￿41Y benwjn 1[￿15% of peiwle wll develop a malign iumour related to their NF1. The most s￿nIfic¥￿ issue for peLyle vnih NF1 is that ￿ occurrence of these complications cannot be p￿￿1(￿ed even wthin families. Many peoth ¥￿th NF1 ako have low selfsteem and this can cause problems fornitng th"erK15hips. ￿ad5 to isolatK￿. though tr￿Se tumours a￿ benign. the posrtmxi in thvJT gTh (¥) Mai￿ pyoblm. The mo cornmon site is on the hearing and balan￿ nerves causiNJ deafness and (I￿rdInatE0￿. The sense of i8olation from deathess onset tn adullhood be inwiv￿. P* Vlith NF2 may abo develop sp￿￿1 Cord tumours. wih

The Neurofibromatosis Assoclalion Report and financial statements Year ended 31 October 2022 their OWTE sNJnrftcant complicattms. Neurofibromatosis Type 2 is a ffllsn¢Jner as wAe affeded do not have neLKofibrom4 thereth there is to be a charity as the websrte and lrterature wiu reqEwe nwyJifKakn. Neurofibromatosis is an unwediraable and variable ge1￿ o)ndbfion that can affect al pe regardless ofgender, race or age. During their Irfeknme. patients may see a yJe rnrffJe of health and social care professionals. both in community arKI hospital setlings. The Specialist Athisor5 act as a point of reference for families helping them navigate through routine planrRd e¥ents and at times of crisi5. Eswtidty, their role is to help people to leam to seek help, rf necessary. As a mult￿sYsteM condrtson. NF has an impact on many ￿e8$ ofpeo's lives, fK>t just health. The S￿ra11st Advisors tske a lead role in liaison and adv(Kacy heath. ed￿tiOn, ar￿ social services to support the qualty and Gontinuty of cale for farn￿leS affeiknd by NF. They seek to develop a seThice tr￿t is pr￿essional. timety and responsive to need. Their setting may be dirical. visitirNJ fanwfies at h(ffie ￿ te￿￿ contaot The qualty ofthe Financial Review Incomo Ggngrdting AGtivilies events, and we are extremety grdtelul frx al theK contin￿1 supwt This has wovthd the chwity v4ith new and diverse fiJrKling streams that can hoFefulty be hamessed for years to come. Duving the per#)d the chanty had resour￿ of£512.516 and a totsl expendibjre of £448.333 lesu￿n9 in net resources of £64.183. Investment Polky The charity's fvnds have been invested wi Shor￿te￿n dewtsits this fina￿la1 yew. A Finan(i AdvI￿Y & Invesknent Group, reporting to the Board of Trustees, has been eSts1￿lshed to contwiue to review this ￿SitiOn and further investrnent opportmtw, to ensure all i￿OnE t¥nlial is maximised wnlh minimum risk. in irwesting, and the inherent rwk. * have COr￿n￿l to elect lo hobj the re5eFves ¥i a mixiure lif 5h(Yt N￿d1￿M term deposits our bankets. However. will £ntinue to moThtor all other options available. Rosarve5 Policy and Going C¢)rt￿n Reserves are needed to bndge the gap btheen the spending and receNing of inccme and to cover unplanned emergency expenditu￿. The Tnjstees consider £500,000 is the ideal level of reserves and berng sufficient unrestrrrAed reserves to fund the Specialist AdvFoT ndw(wk fry a mirwnwn ofiElve rn(Nrttrts due to the number of The Tnjstees consider th adequate resour￿ continue to be avaiLab￿ lo fijnd the activities ofthe charity for the f¢xeseeable future. The Trustees are of the wew th the cknty is a g(Mng concem. The key areas of expenditure conlinue to be the op¥th.￿al cDsts ofthe Specialist Adwsor netsth. Each year. we aim to raise sufficientfunds to mairrtain the nw)rrtts' reserves. Wthe chwty wowdes further funding for the

Tho N8umfibromatosls Association Report and financial statements Year ended 31 October 2022 Publk B•ngfft A]1 our tharitable activibes frKu$ cm the k¥es crfthose affe(#ed by NeurofitThnthis and are urKlertaken to fijrther charrtable purposes for publ￿ benefft The Trustees have regard to the Charity Commission. guidance on the need for chariknes to deliver a pubk benefft and have c(xYWied ryth the duty in Section 1712) of the Chartties A( 2011. Re¢rulknenC Appointment & Induction of Both of Trustees Underthe requirements Of￿ Memornndum arKI ￿￿cleS ofASS￿latiOn. tr on￿th￿d longest slanding member5 of the Board ofTrustees shall retire or wt ￿MselveS fovK￿d r&election at the nextAnnual Genera Meeting. The maxtmum time a trustee remain in p05t is nine years. that may be exteTrJed for a short by the Board on an exctonal basis. The Board ofTrustees seeks to recnjrt a drrfe￿e miK of t￿Siness, me(Ical aThJ p"ent expertise. there is no requirement for a Board member to have any direct or iTrthrecl experTrence of NF. Our new Tnjstees are also qutred to undergo DBS checks. Al Trustees. U[￿n eleraion, meet ¥￿h the Chaw to diswss and agree specffic requiremerts ofthe role. The Trustees. who e also the directors of the Neurofibromosis Assw"abon for the pwpose of company law. are reSp(￿>Ie for weparing the Trustees Rewt Ihe financial Statem￿ in XCLYdaice with FRS102 and the charity SORP IFRS 102). The Trustees must nrt apE￿O¥e Ihe Siatwfte￿ unless are sabsfied that they gNe a true and fa￿ view of the slate of affairs of tr <wity at the the fina￿taL year and of rts swplus or deficit for that ￿n(￿l. lft do1￿ $0. the Trustees are responsible for. sdecting suitable acc(xJnti￿ ￿kieS and then appty Ihem cons￿. company will continue on that bags" and the maintenance and tyrity ofthe C￿ arMI fmaThial Krfonnth WKluded on the ctim's website. The BoaFd ofTrustee5 is reS￿nsib￿ ts matsing Kryer aAxxxJnbng reC(￿ts dis¢k)se reasonable accurncy at arry b.me that the fin￿￿ statements corn￿ ￿1h Comparmes 2(￿. The Board crf Twstee5 is also ￿spOnsit)1e for safeguarding the assets of the dwrtth c¢Jnpary and for takw reasonable step5 for of charty Liw. served dwing li￿ year and up to the date ofthi8 reF*rt are set ￿t on page 1. David HO￿4rd vffjs apwwrted as ￿¢￿¥r under S￿￿10n 145 of the Charrties kt 2011 arnl 44111(cl of trte In so far as the Trustees are aware. at the time of ap[￿0¥￿￿ ourTrustees' annual rerx)rL

The Neurofibromatosls Assoclatlon Report and financial ststements Year ended 31 October 2022 there is no retevant infryma1l￿. being rrform￿ needed by the in connpAion Mfjth preparing their reFKrt of the au(litor is unaware; and indivKlualty taken, have each taken alt steps that ￿She is &)hged to take as a Trustee in order to make inforniation. Small company provisions Thrs report has been prepared in aCcOrda￿e *ith Ihe speaa provisions for ynall oynpanies under Part 15 of the Companies Act 2006. Approved by the Board 0fTn￿ on C￿ Marth 2023 a¥J swed its behaf by: Michael Fry Chair of the Board of Trustoe8 Richard Goode Vlce Chalr & Compary Secrnlary

The Neurofibromatosis Associatton Report and financial statements Year ended 31 October 2022 We have ￿dited the financial Statern￿ of ￿e￿ofth￿ A8YLtlat￿ the year ended 31# October 2022, set out over page5 11 to 23 in It￿5 7knh (xyryThe the statement acbv11￿S. the baLw)ce she& and the Financial Reporbng gandard aFth in Ihe UK •KI lth¥J (FRS102) (effth 1 January 2019) - (Chaiities SORP IFRS 102). In our cyinion the fmncial stat￿￿￿. give a true and far of the st cl urya￿s affaits as at 31¥t iknter 2022. aThl ( its incoming resources and Sp￿￿￿￿0n of res(wrces. for the yearthen ende¢L" have been propedy weparwj in a¢￿dance United Kwdom Generally Accepted ACC￿nting Practice,. and have been prepared in accordan￿ the ComFfanies Ad 2006 and the ChaTtiies and Twstee Investment (Scodand) Act 2005 and regulabon 8 oflhe Charthes Acc4Jmts (rAland) Regulat￿￿5 20t6. Basis forqynion resporkgiknlities under those standards are fijrtlw descrrt￿ in Ihe AUth1￿s respon￿￿11￿5 the audit of the finarrial statements secbon of our repjrt. We are ￿depthnt d the charrlBble comparry in a¢(xxdance vrtth the ethical requiremerts that a￿ relevant to au(tit of the finan¢ia slTr￿nts in the UK, thing the FRC'S Ethical Standard, In audrbrwJ the finarwial stments. have ￿ThAuded Ihat the TnBteeB' use of the going COr￿ern ba￿$ of thaL indNiduaUy or cdleclivety. cast St￿1￿￿nt on the ablty to c£xrtwxJe as a ￿ing concem f￿ a sections of this retKrt the financi￿ stalements and cw aL%J￿$ rerNt thwecrL The Tnjslees are resF¥)nsble for the otsw infomialion t￿mIaIned w¢thin the annual reFO￿ Our ¢¥)in1￿ on the statenths ¢kns rnt cow the other irfom)alion and. except to the exlent othervise sted in our reprf v (k) tN)t express ￿ fcffli of a$sura￿e cOr￿l￿S1o￿ inconsistent ￿1th the finanaa slatements or our kn in tr CO￿Se of Ihe audrt, or other¥￿e appears to be materHIty misstat￿. If ¥￿ identsfy SLKh materia ENx)ns￿tenCles or appent materia Mlsstat￿nents, we are wul￿d to daermine vrtther trus gves iise to a maten MISStste￿ in the st8tements themsefves. Ft, based on the We have nothing to reF*Jt in this regard.

The Neurofibromatosis Assoclallon Report and financial s￿￿ements Year ended 31 Octobw 2022 In our oplnion. based on the ￿dertaken in the c£￿￿e ofthe atmjit". the inforThthon gi4Ten in the Ttustees. Rewytfix the ffftanc4al Y￿ for knncial Slate1r￿ e Mattern on vthi¢h ￿ arg requtred lo rewt ty ex¢epli In the light of I￿r kft0￿edge and Underst￿1r9 of the (aFable compary tts envir0nr￿Frt obtsined in the Accounts (Scotland) Regutalions 2006 require us to re{￿rt to you rf. in our opiiw: adequate and proper accounting records have rnt been kem or ad￿uate for our audit have not been received from branches not visrted by us.. the fman¢ial statements are r¥X in agreement wilh ts &¢￿￿tIr￿j ￿ordS 8ThJ rdums.. have rx)t reoi¥ed all the tnfmb.on exF4anath)Trs re￿￿ autht. the small company' regirne. As explained more fvlty in the Tru&ees' resp(m￿bI1tieS statement set (Att ￿ page 2 to 9. the TnJstee51o are also the dir&tors of the tharitable conyany for the pu[F￿seS ol company law> are resKM)nsible for the preparation of the financial statements and for being satisfied lh they gNe a true and far view. and for such intemal control as the Trustees (tetermine is necessary to enabk the wep¥ation of financi that are free from matertal misStsten￿t, vknether due to frawj or error. In preparing the financial statements. the TTUStees ￿e respCThIb￿ tr assess¥vJ the rImp￿.$ abdty to coniinue as a going ¢oncem. disclosing. as ap￿Kable. matters relat&J to going concem and usiThJ the going concem basis of accountifwJ unless the Tntstee5 th wtterMI to knwdate It compwry or to c&ise Q[wat￿n$, or have no realisti alternative but lo do so. We have been ap￿inted as audik¥ under sedion 145 crfthe Chailies Ad 2011 and Se￿1￿ 4411X¢) ofthe Charities and TnJ3tee Inve5trnent {Sccrtland) Act 2￿5 and under the Companies AL 20C6 and repcxt in accordance th the Acts and relewdnt regu1th"or￿ made or hawng effect therwJrKler. wrth ISAS (UK) w￿1 ahvays detect a material misstatementvthen it exists. Misstatements can arise from fraud or errrx and are consJered mria if. indiiridualty (x in the aggregate, they ststements. 1rTegukrit￿. ind￿lIng fraud. are Instan￿ of nc￿￿C￿lp1B￿e 7Aith and ￿￿lah0n$. We design pr(x*dures in Imie vAth our responsitsltties. wyinèd above. to detwA malerHI mi￿lat￿￿ in respwl of irregularibes. i￿1￿9 fraud. The extent lo whi¢h our prg¢edu￿s ￿ opaL4e ofdefrthng rregu1arll￿e$. Ththing fraud B ¥Jets[￿d bekxy. 10

The Neurofibromatosis Association Report and financial statements Year ended 31 October 2022 Our approach to identifyw and assessNNJ the risks of matenal Misstate￿ in respect of irregularities. includwig fraLKI and non-compliance wth la￿ arnj ￿g￿la110n$, was as fo[kn￿. Ihe engagement partner ensured that the engagement team txsllethvety had the appropriate comrRtence, capabilrfies and skilL8 to knbfy or ￿lse ith appI￿able E•s and ￿Ulalj￿￿. we focused on specific laws and regulations c(msthred may have a direct material effect on the finanaal statemenls orthe opwats.ons ofthe company. includiThJ such as the Chantes Act 2011. taxab.on legislatb)n, dats protection. antFbTibery, arKI heatth and safety legislaticm." alert lo inslances of n￿￿¢0M￿lance tlyoughout the audrL We assessed the susceptibilty ofthe company's fina￿la1 SlateM￿ to material mlsstrT￿. including obtaining an understanding of how fraud mM3ht occur. by" making etwuires of Manager￿nt as to they thn$1￿ there was si•itlity to fra￿1. their regulth"ons,' arKI To addres5 the risk offraud thwh bR5 and override of controls. we.. perfomied anatyb'cal prO(du￿ to wknknfy any unusual or UneX￿d rektionships: tested ioumal entries to ￿J￿ unusual trar￿adiOr￿. Note 16 were irxlutsve of fftnbal trxas: aid In response to the fisk of irregularities and I￿)￿(￿)MplIartt wilh la•ts ￿ reg￿l￿Nts. * designed procedures wlych inciuded, but were not limited to.. enquwing of Trustees as to actual and wtential ￿kn9at￿ and There ore inherent limitatso￿ in cw audit wocedures descriw above. The rTh)re remcNed that laK ond regulations are from finanual transathorts, the less likety it is that we ￿￿Uld become avrare of non-cOmpltan￿. Audtting stsndards aso limf( the a￿￿r( pr(￿edureS required to identsfy ￿n-￿npl13r￿e laws and regulations to enquiry Oft￿ directors and ott￿r manageft￿rrt and the IrtspeC￿ of ￿Ulat￿ and legal Ixwre5fftn¢x, rf any. Material misstatements that arise d￿ to fraud ￿ be hardw to th￿ those that artse from wror as they may invdve deliberate crmcealment or Collusion. A further descrption of our res[w6t￿l1bes tr Ihe au(i of finanoal state￿￿nts is kncated on the Financial Reporting Council's websTte at Iwww.fr¢.ory.ukJauditorsresponsibilities]. This description forms part of our audito¢s 11

The Neurofibromatosis Association Report and financial ststements Year ended 31 October 2022 Use This report 15 made sow to the c￿np￿.$ Th￿rntr￿s. as a body, in accordance ith Chapter 3 of part 16 of the Companies Act 2006. arKf to the charitable Com￿YS TnJ5tees. as a bc. in accordan¢e th RegulatK)n 10 of the Charths Acc(MJnts (scolla￿ Regulatsons 2(K6. Our ¥K¥k has been undertaken so that ￿ rn￿h1 state to the d)aritslJe comparry's members arKI Tnth those matteTr are requtred to st to thwn in an auditors report and for no otlw purpose. To the lullest extent permitted by lav. we do not ￿ or assume responsibility to anyone other than the C*￿ritable company and. the chatitable company's members as a trt)dy and the Charitable ¢x)mpany's TTUStees as a bcty, ts wr audit rf for tt¥s reFKrt orfi)rthe opinions have f(Th￿. Philip IAne FCCA (Senior Slalutory Auditor) For and om behalf of David ￿(￿1rd, Statutory A￿ltOr I Park Road Hampton Wick Kingston Upon Thames Surrey KTI 4AS Dat¢: ..March 2023 12

The Neurofibromatosis Association Report and financial statements Year ended 31 October 2022 Statement of Financial Activities (Including Inc¢yne & Expenditure Accounts) for the Year ended 31 October 2022 2022 2022 2021 Income." Donats"ons & Lega(aes Income fr(m Charitat4e Activities Investrnent Income 317,345 107.150 424.495 308.059 85.521 87.353 668 89.059 Activiti0$ 403.534 104982 511516 397.174 Othw Incoming Resouvcas Total Incom• 403A34 108.982 512,516 397.174 Cost of raising fiJThYs Expendttsjre on chafil activities I(￿.132 1￿,13? 201.135 141.(7 342,202 295,649 T¢)tsl EXpendI￿re 307,266 141.067 448.334 39).589 Net Incoiii8 IExp9nditurn) 96267 131085) 183 6,584 Reconciliation of funds Total funds broUghtf￿￿ard Net movement in fijnds for tr year 471.197 79.949 551.146 544.562 (32.085) 64.183 6,584 Total funds carrlod forwanl S67A65 47 615.329 551.146 exFended d￿1Ve ccmlinuing OF￿￿E0n$. 13

The Neurofibromatosis Association Report and financial sLements Year ended 31 October 2022 Balance shoot as at 31 October 2022 2022 2021 Tangible r￿ed assets 10 754 1.283 Currwrt assots Deblors Cash at bank and in fAnd 302 733.614 733.916 1,769 685.944 687.713 Creditorn . wkiurrts framing due in ore year 12 119,341 137.850 Net Current assets 61£575 549.863 551.146 funds Unrestrided fjJrKIs RestrKled fvnds Totsl fthxls 13 13 7,465 47,864 615329 471.197 $51.146 The finanaal 5Litements e kwared in accordan￿ the special FKLV4lSK￿s of the Companies Act 20C6 and section 138 of the Charrlies Act 2011. These accounts are prepa￿ in accordance ￿ryth Ihe Financial Reporting Standard applThble in the UK and of IrelaTrJ (FRS 102) (effe(*ve 1 January 20191- {Charities SORP IFRS 1021). The notes at pages 1&23 fThTh rftlwe Approved ty the Board of Trugtee8 on (E March 2023 wned on its beha￿ by.. Michael Fry Chair of Thg Boavd of Tntst•es Company Registration No. 03798407 Charity Registration No. 1078790 Scotiish Chaiity Register No. SC045051 14

The Neurofibromatosts Associalion Report and financial statements Year ended 31 October 2022 statement of Cashllows as at 31 October 2022 2021 Cash absorbed by operaknns 15 48.510 83.973 48.510 83,973 Invosting activitios Purthase oftangible fixed assets -3,115 3.059 N8t (d8crease￿increaYe in cash and cash e￿￿valents 47.670 80,914 Cash and cash ewiw*nts * begnnry Peri 685.944 605,030 Cash and cash equivalonts al of Period 733.614 and section 138 ofthe Cha[￿eS Act 2011. These a¢r3XJrts are FfeFwed ￿ accordance Financsal Reporting Standard applicable in the UK and Repu￿￿ of Ireknj {FRS 102) {dl&tNe 1 Jarw 2019)- (Charities SORP IFRS 1021). 15

The Neurofibrffibr￿aIosIs A$$￿1n nkets the dethilion ￿ a benefft entity uThtter FRS 102. The finarKial statern￿ arE ￿epared in sta1trKJ. is the CUFrency of the Chaiity. Éndude t1￿ reVaknab￿ offrethhd woperbes aTrJ to inlude investment propertses and ￿rtain financial instruments at fair val￿. The prinapal accounting pthies ad￿ted are set out below. bl the general (th'ectives of the Charty, and Restricted fvnds a￿ sw lo res1￿.£￿￿ on their ex￿dIt￿re imry)sed by the domr. entilw to the income. and the aff￿Unt can be quantified wtth wsonable ￿T￿y. The folk)wing specffic poli¢ies a￿ applted to part)Jlar categoiies of income". Income frc¥n dOnats"0￿5 and legwes is recewed by way of graTts. th)nations. fijndraisw atKI grfts and is ind￿led full in the stateM￿t of Finartial ActNiiies rewvable. The value of Ser¥￿e$ Fwovided by volunteers has not been inchjjed in these accounts, Income frcKn charrtabte aCtiV￿e$ are accounted for then eamed. and Income resou￿ from grants. related to ￿rf0M￿rtr and speiific deliverables, are year in whth the sub5CriFthn ￿lStered. Expendrture is recognised on an accnial bas￿ a5 a lialxlty is 1rKxJT￿d. Ex￿￿lIture [r￿ludeS any VAT wly( (nn¢A t futy reco¥￿ed. and 15 Fwted as pat ofthe exFthditwe lo it relates.. also irKlude govemance costs. incbje tr￿e eosts associated with meeting the Cc￿5￿b￿lJnaI and staithory requirements ofthe charty and it￿V￿e the independent audit fees and costs linked to the str*w management of the charrty. 16

The Neurofibromatsis Associalion Report and financial statements Notes to the financial statements for the year ended 31 October 2022 support them. AJI costs are aM¢xated btheen ex￿dit￿e ￿leS otthe stateTh￿nt of Finanual Fixed Assets T8￿￿"￿e fixed assets are initialty measL4pd at o)St and subsewenty Meas￿ at ¢))st or valuation, nel of deFYeaation and any inpa1rr￿t k￿es. Depreciab"on.' the value of each asset is WTitten off over yeas. on a stratht4ine basi¥. gl Tfade and other debt0￿ are rwised at the sduemeth am(yJnt due. h) Creditors and provlons event that will probaw result in ￿ transfer offurKls lo a trmrd pty and Ihe amount due to settle the obligalion be measured or eslimaifrj reli. Cre(tit￿ kyoviwns are nornty Tecognised * their setttemenl amount Infomiation and legal slaths of thg chaiity Nevve TuMoU￿ UK is a Chwitable Company. lii¥ied ty ￿¥￿)lee. on 30 Junp 1999. and regstered as a chanty on 5th January 2000 (preV￿ty 284653 registered 1982) v&ith a membership tAse. The company was estat￿shed under a MemoratK1um ￿ AsswatKin. whth established the objects and powers ofthe charTrtaNe ￿)MpanY and ts govemed undw rts A￿"¢￿e5 of Assou.a￿n. In the event of the company bew wx)und up memters are rwired by the adwed ConstibJb"on to contributs an amount not exceeding £1. J) The pension costs tharged in the fmarKg1 ststerrJits re[￿e5•￿ tr Contribut￿ payable ty the chanty 17

The Neurofibromknis Associallon Report and financial statements Notes to the financial statements for the year ended 31 Octokn 2022 Income Total funds Total funds 2021 funds al Donation5 & Legacies Donations and gifts Events Grft Aid Grants Legacies Sijbscriptions 34.357 79.046 27.940 24.100 144.996 34,357 79,046 27,940 131250 144.9 6.906 32.937 57.982 10,849 140.767 59.727 5.797 107,150 317.345 107.150 424.495 308,059 bl Income fvrm Chaiilable A¢tivltw•s Fundraisw for Sale 79224 6297 1.832 81.056 6297 84.314 4.745 85.521 1,832 87,353 89,059 c)Inve5tmont Income Intwest 18

The Neurofibromatosis Associalion Report and financial statements Notes to the financial statements for the year ended 31 October 2022 3. Grants Tolal 21Y22 2021 The Peter Sowerby Foundat)n The Peacock Trusl The Chilth¥ick char1t￿e Trust The Three Oaks Trust The Nom)an FarYHfy Charitable Tr￿1 The Baron 0￿port Charrty The Schon Charitable Twst The Sir James Rolls ChariLibte Trust The Eveson Charitable Trust The Hilary A¥Klry Ctkwilable Tntst The James Tudor Fourth The Sobell Foundation The Astrazeneca PLC The Hospitsl Saturday Fund The Alan Bosell Group Charitatjle Trust The Roger & J&in Jef¢oe Tn The Dixie Rose Findlay Charilable Trust The Ardvick Charitable Trust The Pears FouThJation 15,000 5.000 15.000 10,000 500 1.000 1,650 10.000 10.0th) 10.( 10,000 1,CKIO 400 1.000 1.000 4.000 1.000 10.t¥)) 10,0 7,5 10,0(K) 30,000 2,000 10,000 30,000 2.￿0 10,000 30.000 2.000 10,000 3,000 3,000 2,000 200 10,000 1.000 750 750 The Gaia Foundation The Hadfian Trust The PF Edward5 Charrtable TFUSt The Coral Samuel Charilat4e TrL The Mack FcMJndation The Felmwwy FourKlatK The John Avtns Trust The Str Jules Thom charilab￿ Trust The Roger & Douglas Turner Tw The Thomas J HLYne Memorial Trust The BCH 1971 Charrt*le Tntst Genetic DisordeFS UK The Sheffield Tov•l) Trust The Woodhau Chailable Tntst 1.000 3,000 1.000 2.000 3,000 3,0 3.IXIO 1,000 2,000 5.000 5,000 11.0(Xl 11,0 5,(K)O 1.000 3.417 2.000 100 100 24.1Th) 131 19

The Neurofibromatosis Assoclatlon Report and financial statements Notes to the financial statements for the year ended 31 October 2022 4. Expendiiure Ir¥JetWKIMtAuJitor5 Fee 4.880 1.620 1.095 37.756 28.638 FuThlra 25,￿ rJJ 46.71Y Can¥Jagn$ & EdwalK)n 137,IVa 137.D39 112.LXIS N8ticml Fwir 149225 149225 132,128 1242 1242 7.018 138.039 149225 W.941 Xd.826 staff c( 3A64 &1e4 &870 23.TrI 43,675 41. 274 1.Ir 248 2,037 2.312 1.412 12&) 2.322 2.OV3 17279 17. 817 2.136 , ￿laX 281 161 435 4913 647 8.18B 67a92 67.763 43258 .612 322tr2 10.103 174.686 157.413 448,333 3W.589 IL et¢ 20

The Neurofibromthis Associalion Report and financial statements Notes to the financial ststements for the year ended 31 October 2022 5. Net Incomlng Resources for the Year This is sted after charges". 2022 2021 Depreciation Independent AudEt F 2037 2312 1620 6717 3932 Stsff Costs and niMnben5 2022 2021 Salaries and wages Swal se¢uYity c￿ts Pen￿on costs 180.658 10,450 3.708 194 16 184,914 11.117 3.691 No employees re￿r￿ed emoluments of Thxjre £60.1￿0. The cawity OFwates a pension ￿heme for tts employees as CUffen￿Y required. The average numtr of emthee5 dunrwJ ye￿. Ca￿￿ated the ba515 offiJU-IHne eqU1￿1erts, as follovts: 2022 2021 CEO Membership Sec¥etary ITllnfomation Fun(fraising Change manager Developmeftt managers No members oflhe Board ofTrustees r￿r￿d any renvrnr￿ the year, travel costs totaling £64.70 were reimbursed during the year to one member ofthe 8oard ofTnJ4ees (&st year, no ty)sts Y￿re NmlMJrsed to any m￿nber of the Board ofTnJsteesl. any Intere￿ th any Irarts•kn. As a charty. The Neurofibromatosis ASSI￿allOn 15 eXe￿￿t from tax on inLY)me aThJ gain5 fairing within section 505 of the Taxes Acl 1988 or S2￿ Of￿ Taxati￿ ofCh¥9ea￿e Garts 1992 to the exlent th Ihese a￿ a￿ted to 21

The Neurofibromatosis Association Report and financial statements Notes to the finaneial statements for the year ended 31 October 2022 10. Taryibl• fix8d assots 2022 2021 As at 1 November Addition$ Removal offuty dewe¢iated assets AS at 31 O¢tot>er 8.613 1.508 5.498 3.115 10.121 8,613 As at 1 Novernt*r Charge for the year Removal of bjlty depreciated assets As at 31 October 7.331 2.037 5.019 2.312 9.368 7,331 Net book val As at 1 Novemb As * 31 October 1,283 754 479 1.283 11. 2022 2021 31r2 189) Rent Oeposit Other debtors Prepaymenls 1.858 1.769 302 12. 2022 2021 Trade Creditors Taxation Lottery Grant Other Creditors 44.585 5,621 42.946 10,000 84,905 137￿50 13. Tangible fixed assets Current assets Current liabilities 754 6e6.051 119.341 567.46S 754 733.915 119,341 61S.329 47,864

The Neurofibromatosis Association Report and financial statements Notes to the financial statements for the year ended 31 October 2022 At1 At31 2022 Rgstricted Fund5 Supwrt Groups ResearchlNSA's cwr CaTh NF2 Activibes 3.744 3.744 27269 108.982 141. 16,851 79.949 16.851 47,864 108.982 141.(67 UnrestFthd Furth 471.197 403.534 307.266 567.465 Total Fundy 551,146 511516 615.329 Suppc>rt Group$: Research￿sA.$.. c￿ Camps.. NF2 activittes: This grant ts for the funding of support groups tn Vari￿5 parts of the county Donat￿nS made to be spent on Rese￿￿ SF￿aliSt Supi*Nt NeI￿￿r Donat￿nS restricted to spend on camps for thildren Is. 2022 2021 SurpluSl(De￿1t} forthe year 64,183 Depwiation Finance income 2.312 56 Working eapitsl movements IlncreaseyDecTease in debtors 1.467 18,￿9 13.260 61.873 48.510 16. that actual outcomes coukl differ from those estimates. 23