The Neurofibromatosis Association Report of the Board of Trustees Year ended 31 October 2023 Charity Reglstration Number 1078790 Scottish Charlty Reglstratlon Number SC045051 Company Reglstratlon Number 03798407
The Neurofibromatosis Association Report and financial statements Year ended 31 October 2023 Charlty Name.. Charity Registration Jfflber 107879) Scottish Charity RegIStratic knb. SC045051 Compgny ReJtstralM NumLw. 3798407 RegBtered oflke arKI operaknal address". SN20 OLA Teph8. E¥mall 8ddre4: IY20 8439 1234 N•rv• Tumour4 UK NoNe Tun)Urd UK l# the thivJ ofttk• dwity. rnl•in¥ • legal nan'The N•urof1yonis Bo•nl of TnMI• The current Board of Trustee8 •.' Mlchael Fry {Chdr) Stewart Lee Rlchard Goodg Char) Professor R¢)salle Fem Jonathan Bryce Rohan Chanmugam Profe8¥or Meena Upadhy•ya Matthe•V Joms 8•nlor Manag•ment P•rnonn•l The Tnsstees debeg8te day.ttrday mwgemwrt ofthe ¢tiwity to.. Karen C*xkbum. Chority Dlrector Gillian Andern Slmffi Call Thomas YouThJ I Park Rood Hampton Wc 5 maet Place SuFrey KT14AS Surrey 11VX
The Neurofibromato8is Association Report and financial statements Yèar ondèd 31 OCtor 2023 Board of Truslw Report for th• YMr Endod 31 October 2023 2023. The financlai statemgnts t>)nyly ith the Chwities Act 2011, the Cowwes 2006, Tntr Inveskn (ScLand) Ad 2005. the Chare¥ Accounts Iscotsnrfj Regulat8 2006 las amended), the Memorandum and Artides of A8socialion, and the Charltie8 seMent of Rttommended Practse {'Charilies SORVI lapplicèble to tharitses prwring their nts in accortsrtt ith the Ftnancial Rewtry Stantsd applicable in the UK and Republic of Ir81,. FRS 102} 6ffect¢ve from 1 January 2019. ObJ•ctlv•s and Athili8• Nerve Tumours UK'S witin sees a In the need8 ofeveryiTh tArfth NF are WKI thè ch¥ity to making that happen. To allow Ihe charity to d8lNer this ofhelpry to the ofll¥>se affvthd by NF. lthe new medlcal name for Neurofibrom8tO8is Type 1 (NF1), NF24elated-Schrannomatosi8 (NF21 and Schwannomatosis ISWN)). and in being ntrat to maknng Ihi$ happen, in colkbNabon ith the Hhty Specialised Commmsioning Serylces, fonnerfy the National Commisswing Group {NCG) thed ser. and other assoclatsd medioal prolwlonal un6t8 aroLWMI the UK. Nerve TUUrS UK'8 m1881 Is to improve the INey deveryor affeded by NeWbroM#I0S through supprA1 seThkes, advocacy ond promoting understanding and kwhledge of the ¢dIllOn. Central lo our mi88n 58 our ambitron to bt the UK'¥ authontatwe ¥oKe on Neurofibromalosls and ¢)ur deternthn to Sorvè. $14)port and The charity cOnnU•S to delw its ml•8th thTQUgh see8 to mwrt>grn. and bonfftlarles. 11 endoavours to., We pd0 xcurate. rnle¥. 8nd to datè Inlomiatkn th•t èxpbalrn th? KIOn$ 01 NF1, NF2 and SIW. th• impl8160rffj. thaJleTr388 and cw)rtunth8, in larlguage und•r•tood ty am. Adv1•• pmlde pvaGtKal and emoti¢Jnal to Ip people fmd best services and •upport avwlable. enable peoF4e to makè thokes aboth h¢)w they approach and lfv NF. Advocat• We alm to Ywyeasè krts. wthr•landwy of NF. and VAII eampaign for Conn•ct We take a y¥otsl ui tsirying together gTOUPS of pecyle intertstad kn NF to maxlmlse Fund We make funds avalwkn fry smai to patiert gmups belleve wll make a differ. The charity thvk$ with the fc4bAing gruups to xhieve h ffussion: patnts and ca Fan¥ltes vthh NP The me(111 MMunity NF Specralist Netrrk of Nurses KI Advisws The re5ear¢h commurmty {pattiaAarly The N•The T08 UK MedKal Att Bo8) Supporters Volunteers TUM
The Neurofibromatosis Association Report and financial Statements Year èndod 31 October 2023 Achlwements and Porfommn $usceptibb to the virus due to the asso¢iated Ccxnplw of NF. hVer. Ihe tharty has continued to concentrate on ts central five ser¥ices again ttys year. Vle have o)ntinued to strengthen and dèvelop core SUFVOrt structure8 to ensure that conbnue to wovwJE the test PM75512 5uppxI and informab.on to anyone affgcled by NF. However. our sep4ices ts)ntwiue to face iweased d8mand. Thi$ 1$ due to the urttrtain economic dimate and the resuKK ab$efi ty diffi¢uty n obtsining prirn arKI secondary care Ser¥t5. Most fac&tO•face Gonlt#bO have reWrn•d, Ixrt scvne 8eThices are stil woythd virtualty or ty telephone As a re$ult ofthis orwwng Siation in the wder care sector. ts chaiity took the io expand the Natknal NF Helpline service from lo three days perek from the beglnnng of thos repthr year wlll conttnue to Contlnulng Impo¢t of Covld-19 on Charlty solvk & Pln•n We fvnd a unique arKI vital sarve. not FYo¥ided ty olher crgani5atorn. Ckn servicts are paeLladY importsnt for peop di•3nosed Vtth NF and thwr carer¥. Many people NF are ynerable and often isolated. Our expenence is that many are S11 dlstre8sed by the (woin9 health ¢rt118, as 8om• of thw'r complKations may makè Iham more suxeptr'b to Co19. The eifEct on the tna¢Jer group of peopbe ith NF rnnt"nues. as there Is continua to be a wnificanl bathkng of app.n1mthts for gen•bc¥ arKI neurokyJy dinic#. Thi Inthlty cau8•d by reduced NHS 81affry. many had been r•JOped k> crittal and CO¥19 aThl made wor30 by th• NHS strkns ¢)ver th8188t year. In res38. the <arity rA)nts"M to and grtyv sgrvic•8 to èn¥ure that V ¢oukl ccrtinue to reach support our benefKkn. In parb¢ukqr. the (•rty h concemèd abtyjt the ongolng As the charlty does receive 8lalLrtory or ILt81 lundlThJ, the bukk of the chaiity'8 Ino)me comes from charfftab 94ving and M1$ Tai¥•d from events. M&iy ev•nts agn eItr po8lpMed (Y c•Kelled. h88 agaln had a Snrf9rrt atherse effect on income 8trwns. H(MYver. to ftwKlrJtse a¥ fflh 88 Pble with nN, Innovative. virtual Inlllatlves. As fund a n•knk of Specialtst NF Nurses aT¥J AdvlJors {Spedall8t Athbrys). our poHcy reQreS us to maintain a minlmum 0112 months of reserves. The crity 1>tiNs to react qukkty to ts ¢M$traérts ofthe par#Jemlc and the rewhant econom dimate. This has minirrsed knpacl on th•1gvd ot regerves over the lajt fiMnd81 yoars. At this liTh, ar• Ihat are at4e to contwwe to mathlam our rejerves policy. Plans for Sustalnablllty The pandemic and Current economk cknate forced u$ b) our ztrgic pkn. 8¢)ard implemented a strategy group to look 81 how can to ow ser¥ices. in a p05t-Covid world ar recessionary Koy 8tratsgl¢ Alm•: To kncrease awareness and undovthlng of NF. To provide til and meaningful ¥upwt a)d gLidance to Ih05e livhYJ NF and their wider Support To promote and suppthl research intt> NF. TupAs
The Neurofibromat09is Association Report and financial statements Yeat ended 31 October 2023 Our fu¥ contiftL to be on caft strewnline ow ser¥lces, t)>cKdine ourTM)th with partws and Improve the education of the medical wofeysM. Our aim is lo en8UTe that wple are able to access advice and support as effeth.vely and efficiently as p)ssibte, ether or ncrt that is from the thwity. Thwa year. have launched a new medlcal hub on our website. ith easy access to ¢trres. guJdines and other relevant tcds to edLKe wider allied heatthcare profe.Onals. The charity conllnue8 to Ic¥)k at n8w ways ofthmg. inLtdry clinics, apFts and meetings. AItFb)u9h online SeiCe5 are ncrt prxtical for all (for eXarne, patierts cognitsve impawmerrt aThJ leamng issues), we can see that inwroved ontine nnethty and familiwity lead5 to jLed delivery costs and water efficioncy. In the fijture our Intentton is that a banCe of(v&ine fin perw deliw the ctrgrity to woNryde ser¥Ke8 to more people. Sp•ciallst Advlsorn The chartty con¥nue lo mntsin its Specialist Ad¥isrKs •¥J sed( to idenbfy ¥eas ofthe county wlxre V•t can work wlth the NHS to make Jolnt app)inlments. The charity CuttttY furKls a ol kn sPlISt Advlxn a¥i>ss ts UK 8UPForbw posts In Nthtasll•111, Bknilngham121. Ptymouth, LNerpool. Southampton. sheftld, Leeds, L(x¥)n. Vlale8, thern Ireknd. Unfortunatety. posts bocamg vacant tr year. For Sc£rtiard, as w interlm. 8Je wothng dosely wrfth the Scoth"sh Olftce lor Rarè D8ases. Tthv SpecA"ahst Athrysry5 OFeiale Nwve Tunmxn UK naknal helpllne on a part time ba815. wovK1ti5 advKe and connects pe( affeded ty NF relevant Fw8caThl help. either In thelr communty. or in cllnk. We aim to intrtrkn• p)sts dLwmg the next fin8ncial year In part8 of the U where there has never twn any r•qlonal Suppo &ich post sur4)tsts bet¥w 150- 3.320 pab'ents per year The role of Specialt A(fvisors is very thverse. We have had exolknl feedback frorn faniknes supportod by our Spedalisl Advlscffs. It is plain to that for those famithes. the 8upwI they recetve from the tharity and our Speualist Advisors l pivotal in helwng th8m to cope With NF. Suppcrfb'ng tho SFdallst Advi8OTS ngtwth will ConnUe to be a ktry lo for Nerve Tumour¥ UK Ov•r80% of path.ents wlth NFI have lewThng (tiffKuttles. and apwoxrnatety ère registered as dl8abled, 98 #ra 75% of those patientg wlth NF2. H¢Mver, pubk adrerw8 of NF i# Ow experrte 1$ tho1 thi5 can lead to some chAdren w7th NF struggling at school. inwowale, (Y nonwestent suFfXt. Ner4e Tumours UK offers a schools. ad¥o0ry wviee, iNFonn. stsffed by our Spetsalffjt Att¥isors. ervJaged. the team vrks ckJ8ety teochers. suppryling tsikyed plan8. and mechanism• for enhanwg the chikl's expertence at gthool. Even dwing the parKlem, ftnd that ian slill oper0 iNFixm effectivety. virtually. In the last year, plus, have that more aw ho arn and a8 to pin Ihe iNFomi meeting8 rf [141. Nerve Tumour8 UK ContInu to (fftr • etOn ranp ol IAwatwe and hth)mth. ftx * pe(P arKI professionals. Our Iltoraturn 18 used by mdKal 05$ the county. Ow leallels pamphw are subjecl lo wnstant re¥1 and UKMlats. MediGal prof•ssiw15 are aso n¥ited to Uge the Nerye Tumours UK national helpline. Charlty Reach The Nerve Tumours UK Head ofke t•am tr) vLYk excepli• hwd. TW ttinUe to go above and beyond In reSpoe to the continubng fallcrtrt frryn the and the Board aro onee again very gratehjl frth•Ér efftjrts. Key wvrkstreams have induded the of our website. in Part the Mw medtcal sedion, and the constantty updated research hub. have rd extrerrth positive feedb* slrte its launch In Social media remains an iThwlant and 9rowng a¥¢ca oflhe dwrity's er&agwiient strategy. We contsnue to 8e8 increasing to our websrte. Thi8 has greaty Increa interAm and the support 7At can provide to Ihe communty. Facebook covoraje and engagement ha$ WinUed to grw. l)M 76.700 people 8re reached organicalty each month. and our page views are up ty 7.¥h this year. Our vftbstte aChve8 an average of 68,C users w monlh. Nerve Tunxxn UK'S Twtter Teach ccntlnues to grow steadity wilh 1,712 fr)Ilowers. OurlKets
The Neurofibromatoslg Aggoclauon Report and financial statsments Year èndad 31 October 2023 2087 follows. The numbgr of subsuibers to the TKmS UK fieletter h85 iFKTrased to 4,585 year. We conbnue our membership of a number of other swa and marketing Iyath sh as Medup groups. whk directly tsrget our challenge events outside the CLYnmLthty. At 194 member¥. we are reathirKJ a ider aLvJience than before. On World NF Awareness Day in May 2023 totsl social media posts the r•spe¢tiw NF1 NF2 Days led to the highest peak of acbvliies across sra1 media and the that ye¥. We also rthnue to seek to deveknp arKI $trervtr ow IrtMa1 pwth&$lps lIh orgaiwsats indudmg The Centre for Appearan Research. The Alkance. The Neurdogkal Allian. GwliG Disordèrs UK and Emivacing CoThWety. al inter#J to laurth Ilwee medKal infryrrAkn day5 in the fc¥trKxJming yew. Th• continued rollout ofcore Services thrW the period an excelknt reffle¢1 of Ihe Combined effortB and dfjdution ofthe Speualist Athsors, our members. suppryters. head offte staff and med1 Ad¥wy Board and the TtU8tees arn very gratefvl ftjr thè exceptionalty hard has been put into the ctharty. There arn no Immediate financial concems for the tharity. atthough the )nOM dlmate remaln8 ofconcem, and Nerve Tumour5 UK is still curr(lY on tra¢k to meet Ib lonlerm anCIal targets. 8tructuro, Govornanc• and IAanagwn•nt Nwe TurN)urs UK ij 8 Charitable cpany. limlled ty guar. mcorN on 30 Jun8 1999. and registernd as 8 charlty on Sth January 2000 (weviousty 284653 registered 1982) fjlh a membw8hip ba8•. The company was established under a Memrarnyum of Asxri8tJn. whlch eslablished the cèj.ects and po¥r¥ of the charrtaNe company and is governed under ts Artidej of Assou"ation. In the èvent of the CrynnY MYJund up mem are required by the adopted thstituti to contrllxrte an not exc•eding £1. The dlrectors of the corfparry are also charfty TnMtee8 fr¥ ofchar6ty law. Jnd ffjl•r the cNnpaty¥ ArcleS are known as membefs of the Board 01Trust¥. The Board of Trustees mèets at least fwr times a year and is re8pon¥lble for the strat•gk ('rectic•) and polw of thè ¢hanty and appoints.ng auditm to ensure flnancial cOMlance. Medkal irytrt is gNen via our med81 Advw Board. a rewe8enlatfve of vthch stt8 on the Board of Trustees. M•dlcal Background The memberstdp Is mo• from famili•8 afferknd ty NF. NF1 allects I n •¥wy 2.500 people worthlde. lch means that ther• arn mor• than 25.t)00 In the UK; NF2 li m¢Kh rarer, 1 in 35,000 affected Workti (1.000 in th• UK). An affected person of ether stsx has a 1 kn 2 {50".50) chance of passing aed (8lx)(xm#fi gene on to thelr hiklren. Howéver, everyone has a rhk of havry an affe¢te(I child because 50% of all th¢Jse affecled by NF are the fir¥t person in theirtamty to be affect•d. NF118 a hugoty variable conditson. has the potential to develop a larye Nrr>w of CLNnplKatsons. Some people 1th NF1 onty hng skin involvemen( but poteTrts D)mpk8t)rn Ir1.. gFedfic mIj diffKuRles and b•havhiural prern$. thich affects al)out 60% of all pewk NF1' high blood pressure (hyPertel0n). curvature of tt spme {8coliosis)', malfornkn ofthe W bones Ibeb the knee bekyATthe elbthvl Ipseudarthrosbs).. Farge benign ¥kNI tumours (xitcTht rthrofilx7s). on the ner of sKJhl (o 91Ma).' intsmal. Snal and IKain lum¢yJrn- are usualty b8wn h¢MeVW 11>15% of people wll devebop malignant tumour related lo th'r NF1. The most sNJnificwrt issw people vlth NF1 va Ihat the OTrnCe of these compC¥110n$ c8nnc be wedithd even Vithin frdmlies. Many peoth ith NF1 aLqo h8¥e sellesteem and NF2 consistentty causes more wcthm5 than NF1. aThl it has an increased risk of devdoping brain tunK)urs. Although these tumours are benign. the powti(xi in Ilw w can cause majcf woblem5. The most common site is on the hearirvj and balance ngNes CaUrj with deafvss and cyJordNWon. The sense of Isolation ftom deaffiess (met in adulthood can be irnre. Pe wilh NF2 may *0 develop spino1 ccrt tumours,
The Neurofibromatosis Association Report and flnanclal ststements Yoat èndèd 31 October 2023 their s&nlficant compllrAllon8. NF is an unpredidable and variable tiC conlfiknn that w affe¢X 41 pec rngaftlless of gentler. rnce or age. During their lifetime, pknnts may see a ide rnnge ol heallh and 8OCi81 le professtnals, both in community and ho8Prt818ettings. The Specdi81 Advrnors o¢t as a port of referen for fanwlbes hdFrfng them navigate through routtne planned everts and at times of criM. Essentially. their role is to he people to leam to live fjth Ihe diagno8ls of NF and to ewlp them lih Ihe kvAedg• of¥th. tWe, •KI htyv to leek t, rf nec4ssary. As a muttksystem c¢Jndilion, NF has an impact on many argas of peoFI8'3 Ir. nol just health. The Specialist A01$0r$ lake a lead role in liaison and thocacy 1th tr. education. arKI s(Th15ervices to sup1 the qualty and conlinuty of care for lamlie8 affected by NF. They to develop a seplice that is wthssional, timdy and re8ponslve lo need. Their 8etb.ng may be clinical. Vlbrj tsrnilies al hcrfne cff telephrne contact The quaw of the relationships they eStsb1 is crthcal to their effecknes5 and may ctiJe over yea. Flnanclal Rovlow Our head office team conlinue to de4•knp innovati¥• ¥Yiual fvndraknlrvj hjeu •Trl (c• streams. During the perlod the charty h1 ts)come rewJrceJ 01 £456.409 WKI a tAtsI extwd1rty ot£424,665 reAting in net reSoUe¥ of £31.744. Inv••kn•nt Polky The tharity'8 funds have been Invested in a mlxiwe of year fixed Income bonds 8nd short-term deposlts this flnanclal year. A Flnancial Advw & Inve8lment Gro. e5tablthed ui Lqte 2022, rwtr'ng to Board of Trustees, contuiue to review this Posit¥ and InVeStn opFJnltl?8, to erI8u au in(xffti Fthnttal 18 mwmi8•d, wilh minimwn 118 We gfve careful wnSIderaOn as to howwe make ow rgsorves genate an income frjr th• chanty and h8v• consldered a nLmber of optw)n$ aTrJ informal advlce. At we8ent, given the {rrent rate of reknm. the costs Invofved in Investing, and the inherent risk. V•t have to elecl to thè re8w¥e8 In a mlxture ol short and medlum tem) d•postts with a number of banks. Hcthv4er, morutw all otrw OOMS avwlabte. R•#•rvM Polky aml 13olng ¢)M Reserves fjre needed lo bri(h3e the gap befvrten the swnding and r¢ceNirKJ of income and lo cover unplanngd emergency expenditure. The TNstees ider a minimum of £).000 1$ the thal level of reserveg and belng sufficlent unrestrrict•d TeseThes to fund the Specialisl neIrk ts 8 minimum of tsvefve months due to 11 numbor ot COrrtrx comm6tmerts, 8Th1 ts thaFty'ts (W'ThJ co81s for at lea$1 gix mon. The TnJ8tee$ consider that gdequate reJoLWeeS C¥)ntknue lo be availth• to fuThJ the xtivlbe5 of th¢ ¢hanty for the foreseeable future. The TTUStees are of the view that the charlly18 a goiry o)fwn. The key ofoxp8ndbtiNe to be th opwai¢ml costs olthe spedaNsiA¢t¥l n•tvrk. Eath yell. v alm to raise S[ffict funds to maintain the ielve nKmths' reseNes. ff the chanty wovths fvrther fXIIng for the Publk B•n•fft All our charitable activibes fOS on imFKOVThJ the lives of those afleLted by NF and ¥e underfaken to further our charstable purposes public benefft. The Twstees have rewd to the Charty CoMmiss'S guidance on the need for charities to deliver a public beneft a1 have ¢)Jnplied wth the duty in sth 17(21 of tr Chibes Acl 2011.
The Neurofibromatosis Associatlon Report and fjnancial statements Year ended 31 October 2023 Recrultmenc Appolnlmort & InducthM of Boanl of TnAtO06 Under the requiremert8 of the men18r# aThJ P4ticles ofA8¥IatscM, the ontrttrwd lonpt stan(ling membets of the Board of Trustees Shall retire or wt themskn fryward for re-e(kn attt next Annual General Meeting. The maximum time a trustee can TnaIn in FKt is years, althwh that twne may be extendgd for a short pgrlod by th8 Board on an exceptional basis. The Boafd of Tnlee¥ ¥eeks to reuuii a dr¥er8e mrA of Lxk8wws. methal aThJ pthrrt expertise. there 18 no requirement lor a Board member to have any threct or SrKlwect eXFri of NF. AH Trustees. upon election. meet with the Chair to discuss afKI agree speofic requirements of the rcAe. responsible f()r preparing the Trustees Report and the financial statements in accordance with FRS102 and thè charity SORP IFRS 102). The Trustees must not approve the finanrial slatements are sabsfied that they glve a true and fair view of the slate of affaws of the chty at the end of Ihe financa01 yoar and ol ts $urptus or deficlt for that peric#J. In doing $0. Tn are reSpts for. $elKtiNJ Suitab acn polictes and then appty them ob8eMng the method8 and FwincIOJ in the Choritses SORP.. making judgements a1 estimat85 that 8r¢ reasonable arml rmthnt preparing the finanaal statements on the corKem baw it r4 not apkYopri to auume that the company wim continue that basis,. and Th Board 01Trustl9 ruponsl) fly malntsinry woper acctyJntlrwJ tec(xd8 di ¥th reasonable auraCY at any time that th8 financial $Litements cwty vAth the c(panI•S Ad 2006. Tho Board ofTru$tee818 also responsible for saftguarding the assets of the charitabS9 ¢PY and herte for reasonable Steps the preventlon and d8te¢tK)n and other lffegularltte8. pA•mIrn of th• Board of Tru•t• Membfjrs of the Board of Trustees. are director8 for the purpose of c¥yrpony law, and Truste88 for th• PU010 of thartty LY4V. who seNed durn9 the year and up to th• date of this rew( are set out on page 1. small company provblom Compantes 20. Approved by the Bowd ofTnkn on 04 Math 2024, •KI sign•d on its behaf by.. hJAJ- Mlchaol Fry Chalr of tho Bo•rd of TnMt••# Vlu Chalr & Company S•cr•tary ru
The NeurofibTomatOgis Aggociation Report and financlal statements Year ended 31 October 2023 Independent E¥amln•rs' to Ihè T15 ofTh• NeuTofilwunatosis Assoclatlon IN8r¥• Turnourn UK) I rewi on Ihe a¢Unts of the company for Ihe year ended 3111 Oclobtt2023, vthich are set out on page$ 8 to 18. ¢Uv• rHponslbllltlM of tru>to•s and oxamlntrr The trustees Iwkj are a&0 the directors of the ¢ompany lor Ihe purposes ofcornpany W are Tesponsit)Je for Ihe preparation of the aCcnig. The trustees conslder Ihal an audit is not required for thi5 year undef Part 16 01 The Companies Act 2006. sects'on 144121 ot the Charib"es Ad 2011 (the 2011 Act) or undef Reguialion 10111(al lo Icl of th• chorits.es Accounts Iscouandl Regulalion$ ?OQR I'Thp. ?nr Rljhnnl and that an independent exarninatlon l¥ needed. Th& charitys gross income exceeded £2SO,000 and l am qualified lo undertake the examinaticffl by belng qualified member ofthe Association ¢)n Clwtsred Cerlified Ac1xx and my responbilty to: •xamlne the accounts under sec¢k)n 145 of Ihe Chath$ Ad 2011 and undtrr secfjon 44(1)l¢l of the Charities and Trustee Investment Iscolland) Acl 2005 {the 2005 Acl). lo follow the predrS laid dovm In the general ra¢S glven by the Charity CommLsslon under s•¢lion 14515llbl ol the 2011 Acl: artd to stste whelher particular matters have ¢(ffie lo my attention. Bals of Ind ndent•x8min•rf• r• My èxamlnaiion wa$ carri•d OLrt in accordarts with the general Directions given by th• Charlty C¢>nm1551on andls In a¢¢ord4nce WIVI R¢gulatyr)ns 11 of the charit Accuunts Iscouand) Regul8tsons 2006. An vxamlnallon inGludeJ review ofth• accountkng records kepl by the chJrity eompw18( ol the occouni3 presented th080 records. It 8190 include5 consideration ol any unu8ual liemi or di3dosweJJ in th• 4unt& 4nd Seeng explanations Irom you a$ tru$lets concernin9 any yuch matterÈ. Thè p(oeedurè8 undérthkan do not pnvide all the edence that would bè required Sn an audll and conspquenly no opinion 18 givtsn as wnether the accounts pr•Mnl 4 'lru ond lair and tho rBP9rt li lini¢¢4 IQ Y)oM Malle sel out In Ihp ilafvmgnl hftlfSW d•ni •x•mln•e• •tst•m•nt In eonnodon wlth my vx•mln•llon, no matter has com• lo my attontyon. 111 vthlch qfve5 rne reasonabto cause lo bellevo Ih8t kn any mat•rlal rvsped the l¢qrem•nts'. to keep arlountsng rnc(Kd6 In a¢Gordanco wth seGbon 386 01 Iho Companie¥ hql 2C#% and Mcth)n 44111101 of Ihe 2005 Acl and rRgdalion 4 01 th• 2006 A¢eounts RÈQulan1. and io prep•r• wunlA 1Bh Bccord the 8c¢ountsng records, cnmply with the 0¢nting r•quir•m•nts under Seth"on 398 ol the Conwanles Act 20t6. s•don 44{11{b) of the 200S Act and Regul?tion 8 01 the 2006 A¢Unts RegatiOnS whith are consSstent wih the methods and pnneiples of the St•l¢ment of RMmended Pr¥¢tice." Aceounlng and Reponing by Ch31illes ISORP FRS1021 hgvo not been mél.. or (21 lo whickn. in my opinic. akntion should b• In ovderio •nable a prw understandty of the accounts to be reathed. Slobhan Ghnl¥ter. ACA For and oft bghalf¢f D•¥ld Howard Chart•r•d Accountsnl¥ 1 Park Road Hampton WSck Klngston Upon Th*m Syrrgy KTI 4AS Dat9= 14th Marth 3024
The Neuroflbromatogls Associallon Report and financial statements Year endèd 31 Octobor 2023 ststement of Flnancial Actlvltles (Includlng Income & EXp•nd1rn Accounts) for th• Yoar ended 31 October 2023 T¢)lal nd• 2022 fund¥ 2023 Donations & Le98$ Income from Charitab Aelfvltles Investrnent 277,705 90,450 368.155 424.495 71.377 8.091 8.786 80.162 8.091 87.353 Incomln9 ROUr¢ from Ch•rllabl• A¢tlvltt 357.1n 99.230 456.40# 812,818 Oth•r In¢omlng R••ourt Totsl Incom• 357.1n 99.236 456A09 512.516 Exp•ndltyr•: Cost of raising funds Expenditure on charilable 11Y2.889 102,689 106.132 198.847 123.128 321,975 342,202 301,536 121128 424668 448.334 N•t In¢om• IExp•ndkn) 50.6f 1218•2 31,744 64,113 ROn¢111•11Qn of fvnd• Total fijnds brought fryward Net movement in funds for I year 567,465 47.864 61S.329 551,146 66.637 <23,892) 31,744 64,183 Total fund• ¢arrl•d foThHnl 616 329 Th8 Statement of firwKial xts¥itsey indude8 aH gawys aTrJ ltss8e8 in A]1 incomww resour$ and rewurce8
The Neurofibromatosis Association Report and finanelal Ststsments Yoar ended 31 October 2023 Balance shoot as at 31 Ociobw 2023 2W23 2022 Twoiblg fixed assets io 757 754 Curr•ntu••ts Debtorn Cash at bank in h8nd 11 13,482 787,928 801.410 302 733,613 733.915 Creditors .' amounts ¢ hln one year 12 15S,094 119,341 Not ¢urMnt a•Mts 646,316 814676 61 847 073 29 fund• Unrestricted fvnd¥ Restn"¢Xed fund8 Total fund 13 13 623.101 587,485 616 329 Th• ¢harltable CoMY Is entlued to •xwnpkn from under sec1m 477 of the Conws Act 2006 for t yèar ended 31 October 2023 relalirvJ to smam compgrxe8. The trust888 have not requId the tharltoble ccYry>wry to rtAakn an •wAt ot Its frfwKkg1 •tthn•rts for the y••r onded 31 O&ober 2023 in accrdanc• ith Seclm 476 ofthe Conw1 pd 20r. rosped to accounting recd8 and the preparnkn ofacr#)w The finan(i81 •tatements arn Fyepwtd n 4ceothnc¥ th? th? Crknpaftras Act 2 Seckn 138 of the char88 Ad 2011. Th accounts we wepwed ll) accorda8 wilh Ihe FinwKi81 Reporting Standard apPIati10 kn the UK and Rep of IrelHTrJ (FRS 102) (effth 1 jUY 20191- (Charthl SORP (FRS 1021). The notes at pages 11.18 frrfm p*1 ofth•s• Apprtrftd by Board ofTruslee8 on 04 2024. •KI on Is b&wif lry: Mith••l Fry Chlr ofTho Bo•rd ofTnMtw• Company Registration No. 03798407 Chanty Registralion No 1078790 Scotbsh cfi8 Regr No. SCW051 10
The Neurofibromatosis Associalion Report and financial statements Notes to the financial statements for the year ended 31 Octobor 2023 A¢untIng pollcles The principal accounting 8re sumTrvi%ed bel. Th8 have baen ¢(lstenty throughout the year and the precedry yw. The financial ststements cty tr Charibes Ad 2011. the Companies Ac 2(Kfj, Trustee Investrnent Iscdandl Act 21X)S. the chaiffjes ACcjnts ISc¢Jllandl Regulaliws 20C6 (as amended), the Memorandum Artlcles of Ass¢x3)n. and the Charities Statement of ReccrfnmerhJ8d Pracce rChIlle8 SORFYI (applrable to C1 preparing Iheir acccMJnts ui accordance with the Flnancial ReFth'ng Stsndard app1Kab in the UK and Rewbloc of Ireland.. FRS 102) effectlve from 1 janu 2019. Th8 NeurofibromatM's Assla tYts Ihe defrybw of8 1C benefft entity und8r FRS 102. The fmancial slatemgrts are rnpwed in ¥terlirvJ. is the fvn¢iwal EnCY Df the Charity. The financAal statements have been prepw•d underthe histortsl cosl conventkin. m(xlified to IndLth the rvdaluation Offreeld wopertses arKI to includ8 in¥8stment propthes and certa financial inStrLnts at fair vak. The wiiapal pokies adopted arn set Ixrt below. b) the gemral oectwes of the Charrty, WKI R•strthd fun(18 arn to ther expnditure lrnposed by th• dmor. Incom• I Incoming rVOur¢ arn Irduded fft the slat•ment of finda1 athiti88 WI) the charity is fjned to the IrKon. arKI the amunt ¢2n be quanlff18d wlh rea8 raCY. Thè follovlng 8prf pdid95 are aPled to partM%l4r categones of income: Income frcTh donab'¢Th and le9 15 reIVed ty way of grants. donab'ons, fvndraising and 9th and is fvu in the &atement of F81&1 Actsvibes kn ro1¥4b1•. Granls, enknueMI 18 condltiwl t1 deli of a speofi¢ porfomance by the The Val of ser$ by ¥olunt••rs has not been mduded in these accounts, Incomè from chwltable &livitioi w• accounted tr vthen •amed. and aCUnted for 8$ the charfty the fhJht to con¥lderaUon by lis perfwmance. Th•r• h8# been a chw9e in the a<xounllng poliy for Lifelkne SubscriFtrins from 2010111. Henc income reWur$ frcffi Illetimg sUbScrykn wll b? fulty accounted for in the yew In l)ich the 8ubsa¥lKM18 reglstered. Expendlture Is reco1¥¢d on ) acuual bas15 as a Is hxrred. Expernhure indudes any VAT which cannot be fuHy reo)vered. arKI 1$ repted as part the expenditure to wl)Ich K releS.. Costs (rf raISg funds cx)mprise Ihe costs ass1 atlrncllrvj voluntary income, and a150 indude govemance costs. These inckxk those costs a$Slated ilh meeting the COnstrtutK)n an(1 statuw requrnmnts ofthe tharity and incl the independent ex8mlnation fees and fJ)sts linkal to the strgc managemenl of the chanty. Exwnditure on chwIlab actpirt*s nprI those ¢osts wKurred by the charty Sn the 11
The Neurofibromatosis Assoclation Report and financial ststements Notes to the flnancial slatements for the yoar endod 31 Octobor 2023 Athiities on a basi5 denfjd to rellect the use of the resource. Devon." thets are 7Mitten off over yearn on the 5traiglit Ilne basi$ of depreciation. •) Flxod Asmts Tantyble fixed assets are initialty measLYed at C08t arKI $Seyr Twswed at ¢¢t ty valuati. net of depredati arKI any impairment losses. IndNidual ed ets ¢))stkYJ £250 or more caF¥ialised * rtht Depreciatlon.. the value oleach asset is itteti off over yews. on 8 ¥tr8tht4ne Tr8. At the time of awr0VTr the frn(¥ Slatne. the Tntste88 ha¥e a rna8onabie expectalion that the Charity has adequate resources to continue ni o[watial exkstence for the foreseeabbè hjlure. Thu8. th• D•btorn h) Crndbtorn and pro¥l•lons Creditors and prowsions are rewxsed 7AtOTe the chwiy has a W88ent obl9a1 reSUn9 from a pa81 event Ihat Vlill probaw resutt in the transfgr of frjnds to a third party the amount due to the obligation can be measured (r ests"mated relthtrrf. Creditorn prow$3 are rKJmwlty recogn188d at th8lr 8etUement amthJnL Infomiatlon •nd l•g•l •tatu• olth• thArlty Nerve Tumourg UK a Charllabl8 Company. Iwnrted by war¥rtee, Incorporated on 30 June 1999, and gistered as a ¢harty on 5th January 2000 Iwewouyty 2B4653 regbtsred 19821 wlth a membership bas?. The c¢)mpany was established under a MemorKlum A$s0¢AalIOn. wl)Id) eStsblhed the objects aThJ pfftrs of the charilallè compww and Is gONned under rt tiCles 0¢ A$8ooatx)n. In the èvent of thè company being up Mbe15 requtred by the a&)pteJJ Con8tituUon to contrbuts an awK)unt not •XeIling £1. 11 P•Mk)n• The penslon costs cwged in the finartial ststèments TeFYegent the conbltmjkn P1• by th• charity dudng the yew. ContribLrtlons are made to dofined ntribUt)n xhemey #i the UK. 12
The Neurofibromatosis Assocfation Report and financlal Statements Notss to tho financial statemwts for the year ended 31 October 2023 IrKome Totsl fvnd 2023 fu 2023 2023 2022 •) DoMttoThs & L•ga¢l•• Donations arvj gffts Evènt* Gfftd Grants LEgacSe¥ Subscriptions 36.089 120.189 24,164 13,850 52 5,962 36.089 120,189 24.164 104.300 77.452 5.962 34.357 79.046 27,940 131,250 144.996 6.906 90860 368.155 W95 b} Incom• from Charlt•bl• Acll¥ltl•• Fundralslng 71.3TI 8,786 80.162 81,066 6,297 71,3TI 8,786 80.162 87,303 c)Inv••tm•nt Ineom• Inlerest 091 8,091 13
The Neurofibromatosis Assoclallon Report and financial statements Notss to the financial statements for th• y•ar ended 31 Octobw 2023 3. Grants Totsl Totsl funds 2023 2023 2023 2022 The Grace TnJ8t The Peleock Trust The child Charltat4e TnMi The Three Oaks Trt The Noman Famlty chartta Trust The Baron Davenpcfft Charty The Schon charitab Tn1 The Sir Jame8 Rolls Charitsblo Truli The Eveson eharitsble Tnmt Tho Hllary Awflry Charitsble Trust The James Tudor Foundat Anonymous A3traZenec• PLC Alexlon Pham)acèuknts UK The Hojpiial SatLYthy Fund The Clalre Milne Trust The Roger & Jean Jefcoate Trust The Dlxte Rose Ftrthy Charttabk Tnjst The Culhbert H¢Jm TN¥t The Pear5 Foundatlon The Jo#O1 Hopknns Charllablo FI18 Tho Gaia Foundafj The Hadrian Trust The PF Edwards Chaiitabkn Tt The Orr Mack Fndati The John Avln8 Tnjst Thfj Roger & Douglas Tumer Tvu 750 750 5.000 10.000 10.000 10.000 10,000 10,000 10.000 1,000 1.000 400 1200 550 1,200 550 1,250 10,000 500 s,000 10.000 1.250 10,000 51)0 5.000 10.000 10.000 1,000 7,500 10,000 30.000 15,000 15.000 2,000 0.000 3,000 7.000 8.500 700 8,500 750 3,000 1,000 3,000 5,000 1.000 5.000 700 Tn1 LSEG Thè Sh•ffi•kl Toffi Tnjbt The Woodhal Ch•itabkn Trust 8.000 850 11,000 100 13 14
The Neurofibromatosis Assoclatlon Report and financial statements Notes to the financlal statements for tho year ended 31 October 2023 4. EXndIr8 NF IrthpÈrthnl ExamerFlO 14LY) 37.971 FuTrJr81BINJ 21674 tIOTI 45251 tIO.047 110.047 & CW Supwt N&1 IS2.847 1J2.847 152 847 351059 Stsff 3.107 1936 6,063 1125 2&4 S,S62 45.029 101 197 1.441 1,362 2.719 2,67S 20M8 41 Total 43 OS8 274n 32 11J) 181 m 424 PrnmeB Co 15
The Neurofibromatosis Association Report and financlal statements Notes to the flnanclal statements for the year ended 31 October 2023 5. Net Ineomlng R•sOUr¢ for th• Ye•r ThF¥ 1$ Stated after chy: 2022 Depreciation IndePdnI Ex8mlnatlc#) Fee 1511 2400 2037 4680 3911 6717 staff costs and nnbaTh 2023 2022 Salaries and wages Soc4al Security costh POnOn costs 199.310 11,739 180,658 10,450 215 310 816 No employees Tecerved ernoluThEnts of nwxe than £60.(. The opwatss a P) for Its enwloyees as currenty requtréd. The average nunknr ol •mployets durlry year. cokuld M th• bxth offumkne equk4stkni•, was as folbw8.' 2023 2022 CEO Membétship Secretory rrAnfom•Uon Fundraing Spedalisl Supptyl Change manager Devd0pmt m491 0.8 0.6 &0 No menthrs ofthe Board ofTrustee8 recel¥ed re11KK tho yw. travel cojts tcrtailng £146.14 werg relmbur8ed durfng the year to one m•mberclthe Bowd ofTN&aes (la ye¥. £84.70 lmr8ed b) on• mwnber of the Board ofTru5teesl. Relatsd paty tranBactlo There were no Related Party TransX (kniry the year. No Trustee, or ¢knr pw¥on related to the charliy. had any personal tiltet in any Iransaction. Tax•tlon ofthe Taxes Act 1988 or $256 of the Taxaion ofChwgeat4• Gain$ Act 1992 to the extent thatthe8e are ap1d to its chariti1e objects. No tax dwges have arisen in the Associakn. 16
The Neurofibromatosis Association Report and financial statements Notes to the financlal Statemonts for th• y•ar ended 31 OCtor 2023 10. Tawlbl• ffAOd as•ots 2D22 As at 1 November Addltlon8 Removal offumy dew¢datsd 10,121 1.515 8,813 1,508 AJ *t 31 Oetob 11,636 ArGuMld dopi•cl•U As at 1 November Chary ft>r the year Rem1 of fuly depreaa assets A8 at 31 Octob 9.388 1,511 7.331 2.037 N•t boott v•lu• As at 1 Novemb•r AS at 31 October 754 70T 1,283 754 11. D•btor4 2023 2022 302 Rent Deposlt Olher ¢Jeblors Prw•nts 13 302 12. 2023 2022 Trade Creditors Taxation Lott•ry Grant Other Crèjitors AcuuaL8 and deterred hcor 62.133 4.661 44.585 5.621 20.836 OM 119 341 17
The Neurofibr¢)matosls Associaljon Report and financial statements Notes to the Ilnanclal statements for the ythv onded 31 October 2023 13. Total funth funts Tanglble flxed a$¥ets Current assets Current liabiiiiaeg 757 777.438 155,094 101 757 801,410 155,094 23.972 972 l& Ilov•m•nl In fwmls Atl A131 2023 Support GUp3 ResearcNSpoclallst SuppNt Nets[k Awaren888 Canpalgns NF2 ActivitseJ Supwt C08ts 3,744 3,744 27289 75,736 15,000 99.628 15,LJXI 3,377 16.851 16,851 47.884 99.236 123,128 23.972 Unr•8tricied FurKI8 357.173 301,5 623,101 Totsl Fund• 047,073 Pwp08es of Re8trlct•d Fund8 Support Groups.. ResearchlNS4'8.' Thls want Is for the funrfing ofAvrAXt groups in various parts ofthe rUnty Donations made Id be gpent on Researclv Specwist Supwt Netrwork. Awarene Camp8W$'. Donations restricted to spend on irrfC0n campaigr NF2 a¢livitles'. Support Costs.. Donati¢)ns mad? 8peerf• for the nmning otthe NF2 a(knitles eac year Donations made for spwKJ on head offre slaff trj Support the NSA oper8Uons 15. Flnandal ¢ommlknnts At 31 Octobgr 2W23. charlty had annual c¥)mmllments under noTrcancelLqble operating l¥as•s, folowing rent renegotiations, as follovts.. 2023 Expiry date: Not laterIn one year Lalef than one year and rot Traler than fNe y&w5 12.000 43 18 VE