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 Te￿ph￿8. 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•urof1yon￿is 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 ma￿et Place SuFrey KT14AS Surrey 11VX The Neurofibromato8is Association Report and financial statements Yèar ondèd 31 OCto￿r 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 (ScL￿and) Ad 2005. the Char￿e¥ Accounts Iscotsnrfj Regulat￿8 2006 las amended), the Memorandum and Artides of A8socialion, and the Charltie8 s￿eMent 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-Sch*rannomatosi8 (NF21 and Schwannomatosis ISWN)). and in being ￿ntrat to maknng Ihi$ happen, in colkbNabon *ith the H￿hty Specialised Commmsioning Serylces, fonnerfy the National Commisswing Group {NCG) th￿￿ed ser￿. and other assoclatsd medioal prolwlonal un6t8 aroLWMI the UK. Nerve TU￿￿UrS UK'8 m1881￿ Is to improve the INey deveryor* affeded by NeW￿broM#I0￿S through supprA1 seThkes, advocacy ond promoting understanding and kwhledge of the ¢￿dIllOn. Central lo our mi88￿n 58 our ambitron to bt the UK'¥ authontatwe ¥oKe on Neurofibromalosls and ¢)ur detern￿thn to Sorvè. $14)port and The charity cOn￿nU•S to delw its ml•8th thTQUgh se￿￿e8 to mwrt>grn. and bonfftlarles. 11 endoavours to., We p￿￿d0 xcurate. rnle¥**. 8nd ￿ to datè Inlomiatkn th•t èxpbalrn th? ￿KI￿On$ 01 NF1, NF2 and SIW. th• impl￿8160rffj. thaJleTr388 and cw)rtunth8, in larlguage und•r•tood ty am. Adv1•• pmlde pvaGtKal and emoti¢Jnal to I￿p 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: pat￿nts and ca Fan¥ltes vthh NP The me(11￿1 ￿MMunity NF Specralist Net*rrk of Nurses *KI Advisws The re5ear¢h commurmty {pattiaAarly The N•The T￿￿0￿8 UK MedKal Att￿ Bo8￿) Supporters Volunteers TUM The Neurofibromatosis Association Report and financial Statements Year èndod 31 October 2023 Achlwements and Porfommn $usceptibb to the virus due to the asso¢iated Ccxnpl￿w of NF. h￿Ver. Ihe tharty has continued to concentrate on ts central five ser¥ices again ttys year. Vle have o)ntinued to strengthen and dèvelop core SUFVOrt structure8 to ensure that conbnue to wovwJE the test PM755￿12 5uppxI and informab.on to anyone affgcled by NF. However. our sep4ices ts)ntwiue to face iweased d8mand. Thi$ 1$ due to the urttrtain economic dimate and the resuKK￿ ab$efi￿ ty diffi¢uty n obtsining prirn￿ arKI secondary care Ser¥￿t5. Most fac&tO•face Gon￿lt#bO￿ have reWrn•d, Ixrt scvne 8eThices are stil woythd virtualty or ty telephone As a re$ult ofthis orwwng Si￿ation in the w￿der care sector. ts chaiity took the io expand the Natk*nal NF Helpline service from lo three days per**ek 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 sarv￿e. not FYo¥ided ty olher crgani5atorn. Ckn servicts are pa￿eLladY importsnt for peop￿ di•3nosed V*tth NF and thwr carer¥. Many people NF are y￿nerable and often isolated. Our expenence is that many are S￿11 dlstre8sed by the (woin9 health ¢rt118, as 8om• of thw'r complKations may makè Iham more suxeptr'b￿ to Co￿19. 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•JOp￿ed k> crittal and CO¥￿19 aThl made wor30 by th• NHS strkns ¢)ver th8188t year. In res￿38. the <*arity rA)nts"M￿ to and grtyv sgrvic•8 to èn¥ure that V￿ ¢oukl cc*rtinue 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 M￿1￿$ Tai¥•d from events. M&iy ev•nts ag*n eItr￿ po8lpMed (Y c•Kelled. h88 agaln had a S￿nrf￿9rrt atherse effect on income 8trwns. H(MYver. to ftwKlrJtse a¥ ffl￿h 88 P￿ble with nN, Innovative. virtual Inlllatlves. As fund a n•knk of Specialtst NF Nurses aT¥J AdvlJors {Spedall8t Athbrys). our poHcy reQ￿reS us to maintain a minlmum 0112 months of reserves. The c￿rity 1>￿tiN*s to react qukkty to ts ¢M$traérts ofthe par#Jemlc and the rewhant econom￿ dimate. This has minirr*sed knpacl on th•1gvd ot regerves over the lajt fiMnd81 yoars. At this liTh, ar• Ihat ￿ are at4e to contwwe to mathlam our rejerves policy. Plans for Sustalnablllty The pandemic and Current economk cknate forced u$ b) our ztr*gic 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. TupA￿￿s The Neurofibromat09is Association Report and financial statements Yeat ended 31 October 2023 Our f￿u¥ contiftL￿ to be on caft strewnline ow ser¥lces, t)>cKdin*e 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. gu*Jdines and other relevant tcds to edLK*e wider allied heatthcare profe￿.Onals. The charity conllnue8 to Ic¥)k at n8w ways ofthmg. inL*tdry clinics, apF￿￿ts and meetings. AItFb)u9h online Se￿iCe5 are ncrt prxtical for all (for eXarn￿e, patierts cognitsve impawmerrt aThJ leamng issues), we can see that inwroved ontine ￿nnethty and familiwity lead5 to ￿jL￿ed delivery costs and water efficioncy. In the fijture our Intentton is that a b￿anCe of(v&ine fin perw deliw the ctrgrity to woNryde ser¥Ke8 to more people. Sp•ciallst Advlsorn The chartty con¥nue lo m*ntsin 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 Cutt￿ttY furKls a ol kn sP￿lISt Advlxn a¥i>ss ts UK 8UPForbw posts In Nth*tasll•111, Bknilngham121. Ptymouth, LNerpool. Southampton. sheftld, Leeds, L(x¥*)n. Vlale8, ￿thern Ireknd. Unfortunatety. posts bocamg vacant tr￿ year. For Sc£rtiar*d, as w interlm. ￿ 8Je wothng dosely wrfth the Scoth"sh Olftce lor Rarè D*8ases. 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 Special￿t 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 SF*dallst Advi8OTS ngtwth will Con￿nUe 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 a*drerw8 of NF i# Ow exper￿rte 1$ tho1 thi5 can lead to some chAdren w7th NF struggling at school. inwowale, (Y nonwe*stent suFf*Xt. 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￿, ft￿nd that ian slill oper*0 iNFixm effectivety. virtually. In the last year, plus, have that more aw ho￿ arn and a￿8 to pin Ihe iNFomi meeting8 rf ￿[￿141￿. Nerve Tumour8 UK ContInu￿ to (fftr • e*tOn￿ 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 t￿tinUe to go above and beyond In reSpo￿e to the continubng fallcrtrt frryn the and the Board aro onee again very gratehjl fr*th•Ér efftjrts. Key wvrkstreams have induded the of our website. in Part￿￿ the Mw medtcal sedion, and the constantty updated research hub. have r￿d 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￿ inter*Am and the support 7At can provide to Ihe communty. Facebook covoraje and engagement ha$ W￿inUed 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 aCh￿ve8 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 follo*ws. The numbgr of subsuibers to the T￿Km￿S UK fie￿letter h85 iFKTrased to 4,585 year. We conbnue our membership of a number of other swa and marketing Iyath s￿h 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 s￿ra1 media and the that ye¥. We also ￿rthnue to seek to deveknp arKI $trervtr￿ ow I￿￿￿rtMa1 pwth&$l￿ps ￿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 med￿￿1 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 lon*lerm ￿anCIal targets. 8tructuro, Govornanc• and IAanagwn•nt Nwe TurN)urs UK ij 8 Charitable c￿pany. limlled ty guar￿. mcor￿N￿ 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 Asxri8t*Jn. 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 Cryn￿nY 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¥ Ar￿cleS 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 cOM￿lance. Medkal irytrt is gNen via our med￿81 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 Work￿￿￿ti (1.000 in th• UK). An affected person of ether stsx has a 1 kn 2 {50".50) chance of passing a￿ed (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 h￿ng skin involvemen( but poteTrts￿ D)mpk8t*)rn Ir￿1￿.. gFedfic ￿mI￿j diffKuRles and b•havhiural pr￿￿ern$. *thich affects al)out 60% of all pewk NF1' high blood pressure (hyPerte￿l0n). curvature of tt￿ spme {8coliosis)', malforn￿kn ofthe W bones Ibeb* the knee bekyATthe elbthvl Ipseudarthrosbs).. Farge benign ¥kNI tumours (*xitcTht rthrofilx￿7￿s). on the ner￿ of sKJhl (o 91￿Ma).' intsmal. S￿nal and IKain lum¢yJrn- are usualty b8wn h¢MeVW 11>15% of people wll devebop malignant tumour related lo th￿'r NF1. The most sNJnificwrt issw people vlth NF1 va Ihat the O￿Tr￿nCe of these comp￿C¥110n$ c8nnc* be wedithd even V*ithin 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 CaU￿r￿j with deafv*ss and cyJordNWon. The sense of Isolation ftom deaffiess (met in adulthood can be irnr￿e. 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 A0￿1$0r$ lake a lead role in liaison and thocacy ￿1th tr￿￿. education. arKI s(Th15ervices to sup￿1 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. V￿lbr￿j tsrnilies al hcrfne cff telephrne contact The quaw of the relationships they eStsb1￿ is crthcal to their effecknes5 and may c￿ti￿Je over yea￿. Flnanclal Rovlow Our head office team conlinue to de4•knp innovati¥• ¥Yiual fvndraknlrvj hjeu •Trl ￿(￿c• streams. During the perlod the charty h*1 ts)come rewJrceJ 01 £456.409 WKI a tAtsI extwd1￿rty ot£424,665 re*Ating in net reSoU￿e¥ 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￿ opF￿Jnltl?8, to erI8u￿ au in(xffti Fthnttal 18 mwmi8•d, wilh minimwn 118 We gfve careful wnSIdera￿On as to howwe make ow rgsorves gen￿ate 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 neI￿rk 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•t*vrk. Eath yell. v alm to raise S[ffic￿t funds to maintain the i*elve nKmths' reseNes. ff the chanty wovths fvrther f￿XIIng for the Publk B•n•fft All our charitable activibes fO￿S 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 a￿1 have ¢)Jnplied wth the duty in sth 17(21 of tr* Ch*ibes 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 men￿18r#￿ 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 T￿naIn in FK*t is ￿ years, althwh that twne may be extendgd for a short pgrlod by th8 Board on an exceptional basis. The Boafd of Tn￿lee¥ ¥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 eXF*ri￿ 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 reSp￿ts￿ for. $elKtiNJ Suitab￿ ac￿n￿ polictes and then appty them ob8eMng the method8 and FwincI￿OJ in the Choritses SORP.. making judgements a￿1 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 01Trust￿l9 ruponsl)* fly malntsinry woper acctyJntlrwJ tec(xd8 di￿ ¥￿th reasonable a￿uraCY 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 ¢￿P￿Y and herte for reasonable Steps the preventlon and d8te¢tK)n and other lffegularltte8. pA•mI￿rn 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• PU￿010 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 Ma￿th 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 T￿￿1￿5 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 aCc￿nig. 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* R￿lj￿hnn￿l 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 respon￿bilty 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 pr￿ed￿r*S 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. Ba*ls 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• 4￿unt& 4nd See￿ng explanations Irom you a$ tru$lets concernin9 any yuch matterÈ. Thè p(oeedurè8 undérthkan do not pnvide all the e￿dence that would bè required Sn an audll and conspquenly no opinion 18 givtsn as ￿ wnether the accounts pr•Mnl 4 'lru* ond lair and tho rBP9rt li lini¢¢4 IQ Y)oM Malle￿ sel out In Ihp ilafvmgnl hftlfSW d•ni •x•mln•e• •tst•m•nt In eonnodon wlth my vx•mln•llon, no matter has com• lo my attontyon. 111 vthlch qfve5 rne reasonabto cause lo bellevo Ih8t kn any mat•rlal rvsped the l¢q￿rem•nts'. to keep arlountsng rnc(Kd6 In a¢Gordanco wth seGbon 386 01 Iho Companie¥ hql 2C#% and Mcth)n 44111101 of Ihe 2005 Acl and rRgdalion 4 01 th• 2006 A¢eounts RÈQula￿n1. and io prep•r• wunlA ￿1Bh Bccord the 8c¢ountsng records, cnmply with the 0¢￿￿nting r•quir•m•nts under Seth"on 398 ol the Conwanles Act 20t6. s•don 44{11{b) of the 200S Act and Regul?tion 8 01 the 2006 A¢￿Unts Reg￿atiOnS whith are consSstent wih the methods and pnneiples of the St•l¢ment of R￿Mmended Pr¥¢tice." Aceounlng and Reponing by Ch31illes ISORP FRS1021 hgvo not been mél.. or (21 lo whickn. in my opinic￿. akntion should b• In ovderio •nable a prw understandty of the accounts to be reathed. Slobhan Ghnl¥ter. ACA For and oft bghalf¢f D•¥ld Howard Chart•r•d Accountsnl¥ 1 Park Road Hampton WSck Klngston Upon Th*m Syrrgy KTI 4AS Dat9= 14th Marth 3024 The Neuroflbromatogls Associallon Report and financial statements Year endèd 31 Octobor 2023 ststement of Flnancial Actlvltles (Includlng Income & EXp•nd1￿rn Accounts) for th• Yoar ended 31 October 2023 T¢)lal nd• 2022 fund¥ 2023 Donations & Le9￿8$ 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 R￿OUr¢￿ 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 R￿On¢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 CoM￿Y 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 requI￿d the tharltoble ccYry>wry to rtAakn an •wAt ot Its frfwKkg1 •tthn•rts for the y••r onded 31 O&ober 2023 in acc*rdanc• *ith Seclm 476 ofthe Conw1￿ pd 20r￿. rosped to accounting rec￿d8 and the preparnkn ofacr#)w The finan(i81 •tatements arn Fyepwtd n 4ceothnc¥ th? th? Crknpaftras Act 2￿ Seckn 138 of the char￿88 Ad 2011. Th￿ accounts we wepwed ll) accorda￿8 wilh Ihe FinwKi81 Reporting Standard apPI￿ati10 kn the UK and Rep￿ of IrelHTrJ (FRS 102) (effth 1 j￿U￿Y 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￿ Reg￿r 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 c￿ty tr* Charibes Ad 2011. the Companies Ac* 2(Kfj, Trustee Investrnent Iscdandl Act 21X)S. the chaiffjes ACc￿jnts ISc¢Jllandl Regulaliws 20C6 (as amended), the Memorandum Artlcles of Ass¢x3**)n. and the Charities Statement of ReccrfnmerhJ8d Prac*ce rCh￿Ille8 SORFYI (applrable to C*￿1￿ 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 Ass￿la￿ tY￿ts 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 Offreel￿d wopertses arKI to includ8 in¥8stment propthes and certa financial inStrL￿￿nts at fair vak*. The wiiapal pokies adopted arn set Ixrt below. b) the gemral o*ectwes 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 fin￿da1 athiti88 WI)￿ the charity is fjn￿ed to the IrKon￿. arKI the amunt ¢2n be quanlff18d wlh rea￿￿￿8 ￿raCY. Thè follovlng 8p￿rf* pdid95 are aP￿led to partM%l4r categones of income: Income frcTh donab'¢Th and le9￿￿ 15 re￿IVed ty way of grants. donab'ons, fvndraising and 9th and is fvu in the &atement of F￿8￿1&1 Actsvibes kn ro￿1¥4b1•. Granls, enknueM￿I 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 aC￿Unted for 8$ the charfty the fhJht to con¥lderaUon by lis perfwmance. Th•r• h8# been a chw9e in the ar the year Rem￿1 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$¥ets Current assets Current liabiiiiaeg 757 777.438 155,094 101 757 801,410 155,094 23.972 972 l& Ilov•m•nl In fwmls Atl A131 2023 Support G￿Up3 ResearcNSpoclallst SuppNt Nets￿[k Awaren888 Canpalgns NF2 ActivitseJ Supwt C08ts 3,744 3,744 27289 75,736 15,000 99.628 15,LJXI 3,377 16.851 16,851 47.884 99.236 123,128 23.972 Unr•8tricied FurKI8 357.173 301,5 623,101 Totsl Fund• 047,073 Pwp08es of Re8trlct•d Fund8 Support Groups.. ResearchlNS4'8.' Thls want Is for the funrfing ofAvrAXt groups in various parts ofthe r￿Unty Donations made Id be gpent on Researclv Specwist Supwt Netrwork. Awarene￿ Camp8W$'. Donations restricted to spend on irrfC￿￿0n 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 ¢ommlkn*nts At 31 Octobgr 2W23. charlty had annual c¥)mmllments under noTrcancelLqble operating l¥as•s, folowing rent renegotiations, as follovts.. 2023 Expiry date: Not laterI￿n one year Lalef than one year and rot Traler than fNe y&w5 12.000 43 18 VE