The Neurofibromatosis Association Report of the Board of Trustees Year ended 31 October 2024 Charity Reglstration Number 1078790 Scottish Charity Reglstration Number SC045051 Company Reglstratlon Number 03798407 ux The Neurofibronmtosls Assoclalion Report and flnanclal statements Notes to the financlal statenwnts for the yearended 31 October 2024 Charty Name: The Nejrofibromathis Assodatk)n Charity Regstratson Number. 1078790 SLY)tti5h Charty ReJthalm ￿nkner. SCO4&￿1 Company Reg*alfon Number. 3798407 Chgthy Workiry Name: Nerve Twnouts UK Reg*iered office ar opera10￿1 ￿(e&s. SW20 Telephone: E-mall aldress: Wetfjtte kn: 020 8439 1234 IrrfrQneNetum(wr8.org.uk .n•N&umour&orguk N•rv• Tumour• UK Nervè Tum¢)urn UK18 Ihe worklffj name olthe ¢harlty. vthlch retsirn tt8 legd name"Th• Neuroflbromato Assodatlon". Boaid of Truste The current Board of Tntsteeg18: Rlchard GorAJe (Chalr- app)Inted 03 June W24) Ml¢hael Fry IChalr- rettred 03 June 2￿24) Professor Rosalle Femer Jonathan Bruce (Vice Chalr- apFM)inted 03 June 2tr24) Rohan Chanmugam Proles80r Meena Updhyaya MatthewJones Senlor Manffjement Personnel Tt* Trustee8 delegate daY.t4￿aY management of the charity to: Karen Co¢kburn, Charity Dlredor Patrons Glllan Andw80n s￿On Call TIK)mas Young Prol. D.Gareth Evar Indep￿dent Examln8r8 DavKI Chartered ACCO￿ts 1 Park Road Ham￿On Wld( KIWon- upon- Thames Surrey KT14AS Banke NatlorAI Weslmlr* 8ar&k P 5 Market Place Kin ¢)n. upon. Thames S￿reY KT11VA The NeurofibromatO8ls As84)clatlon Report and flnanclal stateme Note8 to the flnanclal 8tatements forthe ythr ended 31 October 2024 Board of Trustees Report forthe Y￿r Ended 31 October2024 The Tn*es of The Neurofibrom￿ As￿dalk)n, tralffvJ as Nerve Tumours UK (NTUK). are pleased to wtsent their annual feport and fln*icial st*ements lor the year etsaed 31 Octthr 2024. The financial statements corn￿ the CtArlie8 kt 2011. the Companies Act 2W6. Tntslee Investrr*rt (Scolland) Act 2005. the charfties Acix)unt8 (Scotland) Regulatiorts 21M)6 (as amendal), Ihe Memorandum aTh Articles of As8ociati(Jn. and the Chartt*s Statement of RecommerKled Practice ("Charitles SORIY) (appllcable to charttles preparlng their accoun18 in accordan￿ with the Financial ReFKMltr¥ standa￿ appllcatle In the UK arxl RepubliG of Irelan¢ FRS 1(r2) effedtve from l January 2019. ObJ•cllves and Actlvltl•• Nerve TumourJ UK'8 8ee8 a fulur• In Ihe need6 of •v•ryone NF are m•( and the charlty Is certral to making that happerL To allow the charlty to deliver this vlslon of l*r¥ to ThFYove the lfves ofthcqe affethd by NF, the new Med1￿1 name for Neurofltffomatr*ls TyF• 1 {NF1), NF2-relate&SctwMnnomatctsis (NF2) SCh%￿nn0Ma1OsIS {SWN), and In belng Gerrtral to maklrg thls happerl In collat)oration vlth the Hlghly Speclalls&J Commlssionlng Services. forrnety Ihe Natlonal crynmissl￿lng Group (NCG) lunded serv1r￿. olher associated medkal professional and educatlonal eslablishments arourKI the UK 8*0 In collabmtion ￿ %Mder intematlonal part1￿8. Nerve Tumourn UK* mission i¥ to Improve liv￿ ol everyone affeGtffil by NF through SUFP)rt swviw athocacy a￿1 Promot1￿ ur¥ler6tarKliry a￿1 kn(tAedge ol the Gr￿dItIOn. Central to our mlsskm is our amtAtlon to be the UK'S auth)iilalNe volce on NF and our detenninalk>n to sern, Support and ¢e￿brate the I￿e8 01 people Impacted by the corKlltlO￿ and Iheir Imder suP￿rt net*r The charfty continues to deliver its mbsbn fNe key seTrices to supwlers arKI benefi¢larle8. It erKIgavo￿s tth. Inform We provid• accurate, relevarrt, and upto dale inf0m￿n that expkins the conditions of NF1, NF2 and SWN, the impkdorn. challeweB and opwlurNtse8, In laryu4e undernlood ty au. Advla• We prwde pra¢*al and emotional a(fvice to help FeOF4e firKI the t*st service¥ and supp)rt available. We enalle peo5Ae to make Gholces a￿ut they apwoath and Ihe %ith NF. Advocate We aim to Increase knTh*ledge, awareness and ￿KIe￿lar￿11vJ of NF, aKI VAII campaign for chaffje in areas we believe wll improve the Ilve6 of Ihc6e affeded by NF. We take a Fivotal ro￿ in brIrwJ￿￿j together grouF6 of peorle Interest￿ In NF to maximlge the supp)rt ￿ info￿1)n available to We make f￿d3 avauable for small wcieds to t￿1¢¥ patient grouF6 ￿re we belteve It ￿11 make a difference. ConnKt Fund charity works ￿1th the frA10￿ groups to athleve ts mission: Patients arKI ￿rern Families Yaih NF The me¢tsl cammuftty NF Spedalist NetI￿rk of Nurses and Pafviso The research o)mmunity (particulafty The Ner¥e Tum(wrn UK Medical Board) VK The Neurofibnmrntosls Assoclatlon Report and financlal statements Nots8 to the flnancial statemeftts forthe year ended 31 October 2024 Leading UK Unlversrttss NTUK Spor6ored PHD researc1￿3 Supporter8 Volunteers Other chariti# and umbrelk Olg￿￿atIonS Achlevements and Perforniance We ¢￿ntinUe kn te hlndered by the ongoiffj re[￿¢￿￿ ofthe thi&19 pandemlc, as people NF are more $usceFklble to the virus due to the assodated (￿mF11caIlo￿s ol NF. Hth￿eT. the thaiity conlinueg to con￿ntr￿e on its central five services. We have also conlinued Mxking to strerWen and develop our core supwrt ththfes to er￿U[e that ￿ maintain the trTht ￿ible SUFP)rt and *t¥se servw for anyone affected iry NF. However. our services continue to la(% incieased deniand. Th15 ig due to the uncertaln ecOr￿MIC dlmate and the resulting atsence or dIff￿lIty in obtaining wimary arKI secornjary ￿[e seThices. Some seNices are 6till wovkled virtualty or by telephone conS￿l0n ￿thIch cause immerv ￿Oblem lor people y￿lti NF. either do not have the fradlities to join vlrtual apFdntmert or lack th• to or￿1￿0 ergap. 16 the wortd mu8t nthy adaFI to. As a re8uIt of this ongoing sitijatlon in Ihe vfAler care s¢dor, Ihe charity look the deasion to expand the National NF Helpllne seNice from two to three days per from the end 012021 aThl will Gorth'nue to monrtor demand to 8￿Ure the servlce meets the needs oflhe Gwnmunity. Contlnulng Impact of Covld on Charlty S•rvlc•s & Flrances We fur¥J a unique ar¥J vilal 8eNi¢*, *thlch b not wthled ty ary other opJan**ior& Our 8ervi¢x are ￿rtICUla￿ importani lor people diagnosed vAth NF and thelr carerd. Many Feople vAth NF are vulnerable and often Isolated. Our experienco Is that many are stiii dtstressed by the ongolng health crtsls, as Some of their compltcations may make them more susGeptit4e to Covid. The effed on Ihe Ixoader group of people Nmth NF continues, 89 there contlnue8 to be a slgnlllcanl to¢klcg of apwlments for ger*tics and newology cllnics. This was Initially cawd by reduced NHS stafflng In 2020 a￿1 8ubgffjuent y¢ar4 as many IHd been r•JeF4oyed to criti¢al aTrJ COVKI servkes, but was m¥Je larwrr3e by the NHS strll(es cNer Ihe last ol years. In re$F￿n3&. the ctsity hag corthued to provlde and growservlces lo ensure Ihat we reach ar￿ support our teneficlath. in any necessary. The ch￿lty is still extremely ￿l¢erned about oroolTrJ ptsnllal on mental healh both for Our benefKiari8g our staff. due to workload. As the charity doeg not receive statutory or l¢)Gal fun￿￿ the tMJl( of the charlty's Income comes from charltable givlng and monles raised from events. F￿￿natety m¢xt major events have retumed to the calerKlaf, h¢￿￿er the ammunW8 orvJoirvJ fear ol mlxlTrJ with Covld slill ￿eValent, means thal all commu1￿ty small 8cth lundraisiry has all but (fsappeared for now. Thb has trod a gignfficant adVe￿e effect on Irtc(xne Streams. HO*￿r, the head offtce team contlnue to fundral6e a3 much as [￿fits1e bmth new. Innovatlve, and virtual Initiativ As we fund a netwxk of Specla115t NF Nurnes and Plvws (SpeGiallst A(fvlsorn). (￿r policy requlre6 US to malnta mlnlmum of 12 months of re8eNes. The charty contlnues Io react qulckly to the COr￿tralrts placed on It by the Jrrent eCOr￿MIC dimate. Th￿ IAS minimised the the level of reserves over the last few Ilnancial year4 al￿ at thls time. are confrflent that ￿ are able to contlnue to malntan our reseNes poli¢y. Plans for Futurn Sustalrnblllty The pandemlc arml ￿TTent e¢(￿4)MiC dinmte forced us to reCOr￿lder our stra1* Oan. The Board implunentaj a strategy grouA ￿lCh contlnues to look at howlhe ¢lwrty can wovlde and expand ts seThices, in thig Fostthid arKI recessionary economic environment UK The Neurofibrnmatosls Assoclalion Report and flnanclal 8tateThnts Notes to the financial statements for the ywended 31 October 2024 Key StrateglG Alms The chanty's key slrabJic airrB are to: Increase avrdreness and urthstarKlirg of NF. Provide timely meaniWI support arKI guidance to tthe fNiry knith NF arKI thetr %￿ler supwt Promote ar¥J support research into NF. Our focus corrtlnues to be on howkne can *ream￿n￿ yet exP￿d. ¢Jur servkes: ¢(￿rdl￿te our with all partners incI￿ling research bodles. and improve the ￿Cation of the medical wofesslon. Our aim Is to ensure that people are able to access a￿tate and timdy ajvtt •KI supwt as effectively arKI efficiently as possible, ￿ether or not that Is from the Gharty. The rtArity's staff and merf￿al neiwJrf( cortinue to womote the rmy medlcal hub on our welEitq ￿lch gNes easy access to ledures. guKlelines a￿1 ¢Aher rekvant toots to educate wider allied healthcare Wofessi￿ls. Ttr£ charity akn strives to find newways ofw)rfdng. indudir¥J ￿rtUal cfiniGs. aN)dntments meetin￿. Alihough online seTVi(xs afe not Fyactical for aN (lor exanple. patients Imth cognitive impairment and learning tssues), ￿ ¢an see that improved online ￿Me¢t￿ty and faffliliarity leats to rethJcaJ delNery costs greater efficiency. In the ftrture our intention is that a balarKe of online and in person delivwy will allowthe charity to wovide serva￿ to more peo Speclallst Support Network The ¢haflty will conlinue to matrrtakn ils Spe¢Altst Supwt Ne1￿￿ of Nurnes & fvAlvEoryJ arKI will seek to Identify areas of Ihe ￿ere ￿ can *lth the NHS to make joint appohrtmw The charity currently fuTrts a ol eleven Spe¢klst A(fvEorn a¢x(6s the UK sUpF￿1n9 Fwts In NeKastle {1), Blmiingham (2). Ptymoth (2). LNerpool. s¢Jjthan￿ry Sheffield. Leed5, LoTthry Wales. and tAs an association wlh Northem IrelarKJ. Unfortunatety, the pc¢t in Sc(rtlarKI 15 $1111 vacan( arKI as an interim, we are rking cl)sely with the Scottish Office for Rare Oi5e*e4 armj the Nati￿al Helpts"ne Wor￿3 cl• with Clini¢al Genelics at the Queen Elizabeth Urdversity Hospital b￿1 in Glasgow Tw) Speaalst NF Nuw operate the Nerve T￿￿(￿5 UK National Helth on a part time tosis, provths advice arKI connects ￿*ple affected NF wfth relwart wathrdl help. pilher In their a)mmunty. or in dlnic, across three days of the w0th1r￿ On irtsim day& the l*aJ offte stair qxrate a tri¥ helplinq b)ohiry in appointments or referrThw to regional SFecialist NF Nurnes. We am to Intr¢x1u￿ t￿) new posts the next financial year in parts ofthe UK ￿e there has never been any regional sw. Each of our current Fx6ts su$¥￿ts I)et￿n l￿- 3.320 pat￿S ￿ year ￿rkIng via dnics. The role of SpeCial￿t Nu￿￿1A￿￿￿S is vw divers& We have had excellent feedba￿ from the farnlTes swpirted by our team al￿ it is plain to see that for those famdies. suw(xt they receive from the SpeaaBt Support Nelwork is pivolal in helping thern to CO￿ wilh NF. FUrK1w￿ and exparMlir¥J the Srttialist Supwt Netwrjrk will continue to be the key role for NeNe TWnOu￿ Uli Over 60% of KAlierts %%ith NF1 have leaming difficukn. and 30% are ￿jIStered as disaljled. as are 75% of those Fmtients with NFZ Ho￿*ve[. awareness of NF across all professm indudirwJ the medical profession, is low. Our exF)erien￿ is that this can lead to some ctuklren NF str￿glIng at sclKJoI vAth inaprxopTBte. or no existent sup￿￿ Nerve TuMoU￿ UK off￿5 a sthoob. alvw servicq iNForm. opwated by our Speraalist Support Network Where engaged. the team w)rks closely with teachers. SENCO'S. allied I￿alhcare PTofesslona15, and parents. supportiro tailoT￿j leaming Fkn. arKI SU￿eSti￿ niechanBfffj for en￿nCir0 the child's experience at school a result olthe pa￿10 hwe found can 0￿rnte NFomi effethvety, albeit virtually, arKI The Neurofibromatosls Assoclatlon Report and flnanclal statements Notes to the flnanclal statements forthe yearended 31 October 2024 ID the years 81nce we have fouTrl that more allled healthcare profe831onalg are I￿111ng and able to Jokn the INForm meetiry rf they are held vlrtually. Nerve Tumourn UK contlnues to offer an extensive range of Ilterature arKI infomiatlon, for ky people artsl Is al80 idely used by allled healthcare professlonals across the UK and further afield. Ow leaftels and pamphlets are Subject to u)rtstant revlew and upaate. M￿l¢al wolesslonals are also Invited to use the Nerve Tumourn UK Natlonal Hdpline and on4ine Medical Hu Charlty Reach The NeNe TuMoU￿ UK Head Offl(* team contlnue to exceptionally hard. They cortinue to go above a￿1 beyond in [￿e to the contlnuing fallout of the last few yea￿. and the Board are again very grateful for thelr efforts. Key wothstreams contlnue to be the ever furthw develowent of our thitq in particular the medical 8edion, the constantty UPKlaed research huty arKI the collaborati￿ useful organB*lons sectioTh We contlnue to receive extremely le￿baCk sirKe the launch ol the med1￿1 sectlon in 20Z3. and have seen how th18 Improves and widens our engagement M￿lc31 prolessionals, partlujlarly Social media remalns an Important and ever gr0￿Ing aspect ollhe charlty's engagement stTategy. and we contthue to see an Increased numkw of vists to ourwthite, whlch has greatty increased our inleractlon and Ihe ongolng support ￿ can wovhae forthe communty. FaCe￿0k ¢rnrage and engagement ha8 conllnu￿l to grow arKI al the end of the year. a flgure of 96.$67 people were reached organtcalty ea(* month, and our page vlews are up by 9.3% th18 year. Our wetsite achleved an average 0179,303 UBern per month. Nerve Tumour6 UK'9 Facetjook reach also continues lo grrm sleadity ￿1th 8,009 lollower3 and a monthty rea¢h o11.1mlllion. Ir￿lagram, y￿th the Implementatlon of slorieB and market1￿ content adjU￿Ments, nows18nd8 at 2,224 lollowers ar￿ a reach o12&S,000 by Ihe end of the year. The number of Sub￿rIber$ to ItB monthty Nerve Tumour8 UK newJletter Stands al 3,412. Olrect messagiru arKI communication via soclal rn￿la, withln the communty, centres ar¢und the cl￿e ¢ommunlty group, whith has 1412 membern. During Workl NF Al￿reneSs Week in May 2ff24 total sodal media p)sts on the pective NF1 al￿ NF2 Days, colncldlng with our b11lboa￿ campaign"Everytx•Jy19 bom a Champlon. featurlng our new ￿r0D. Para GB SpTlnter. Thomas Young, to the hlghesl Feak of athty a¢ros8 8oclal media, and the resuttant hhjhesi traffiq ofthe year. We also contlnue to 8eek to develop and strengthen our Ir￿UtIOnal partnershiF6 %Mth organlsatiorLs inc1￿11ng The Centre for Appearance Research, The Geneti¢ Alllance, The Neurologlcal Alliance, Genetic I)Wde￿ UK ar Embraclng Complexlty. We also have three medlcal infomatlon days planne¢ Nthich will be both in•erson and INestream&l, to reach a8 many ol the community 99 fTh81bk. Th? corfnued rollout of cAre seNlces thwhout t￿ period ig an excdlent ffjlledlon of cornblned efforts ar#J dedic8tlon or the SpeaalK%t NeI￿rk ol Nur3&lAdvlsor4 our mernt￿￿ supportern, head office slaff arKI the Medl¢21 Advthory 8oard, and th• Trustees are very watelul for exceFAlonally ha￿ has teen put Into11 There are no immedlate financial ¢4￿CernS for the charity. although the current econornlc cllmate and upheaval remains of ¢oncem. The Irustee3 malntaln that Nerve Tumour8 UK ig stlll currently on track lo meet rts lonfrtemi strategic and finandal largets. Structure. Governance and Management Nerve Tumours UK is a cha￿tatsIe Company, limlled by guarartee, In￿rporated on 30 June 1999. and reglstered as a charty on 5th January 2000 (previously 284653 registered 19f2) ￿lIh a membership bas& The ￿MpanY wag establtshed umler a MemorarNlum of AGs(Kiation. ￿ch establish￿ the objects and ol the chaiitable ompany and * govemed under Its AJtscles of A6S￿X￿rL In the event of the comFOry belrtrJ w)und up memtws are required by the adopted Conytitullon to contrilxrte an aM()u￿ ncl exceeding £1. The directorn olthe company are also charty tnFtees for the purFKMS of Gharty I￿, and under the companys Arttdes are known as membern of the Bo¥d 0fTn￿le¢s. The Board ofTntslees meels at least lour tlmes a year ar￿ is responslble for Ihe slratèJlc dlrection arKI po￿￿1 of the charity and app)Int1￿ authtorn to e￿￿re firtan￿1 ux Neurofibromatosls As8oclatlon Report and flnanclal statements Notes to the flnanclal statements forthe yearended 31 October 2024 compliance. Medlcal Input ts g￿en vla our Medlcal AdvBory Bo￿. a repre￿latIve olwtiith stts on the Boafd of Trustees. Trltstees are selected for their kn¢￿edge of NF and the various professiork8. O￿lMize the knO￿ledge ar￿ ability of the Board. A sub group ollhe Board of Tr• the Financial PAlvMry Group, and indthling the Charity Diredor. has tMn establBhed to COns￿er arKI n￿nIttiT the financial and IrNeslment aCtNIt￿ olthe charlty. Medlcal Background The charity's membershlp b mosty drawn from families affected by NF. NF1 affects 1 in every 2.500 people worl¢tside, means ttr￿t there are more than 25.000 in the Ull NF2 is much rarer, 1 In 35.IJQO affeded worldwide, valh 1,000 in the UK. and there are approxlmately 500 people dlagn08ed Imth SWN. An affeded person of elther sex has a 1 in 2 (5tr.50) dHn¢e of passlrvJ Ihe altered (atjnomial) gene on to their children. However, everyone has a rBk of havlng an affected child be￿USe 50% 01 all th(6e affected by NF are the firnt person In their famty to be so affeded. NF1 ts a h￿ety varrable condlllon, has the polertial to deveknp a large numter of ¢J)m￿tIOns. Some people ￿7th NF1 onty hav1￿ skin involvemert but p￿￿tial complicatiorr& incl￿& sK*dfic learnirg difficullies and l>ehavioural problems- vknich affec*s atKJut 60% of all Kwle with NF1: high blood FKessure (hyFXrtension); curvature of the spine (scollosls); mallormation of the long bones (belthv Ihe knee and telow the elbow) (Féeudarthrosls); large benign sk¥1 tuMoU￿ (Flexrfomi neurofibioma3): turnou￿ on ttr￿ neTves of slght (oNic glioma): inlemal, splnal and brain tumourn- %thich are usualty benign however 11>15% of Feoplewlll develop a malignant tumour related to thelr NF1. The m¢%t signikant rAue for Feople NF1 is that tre oc￿￿en￿ of these compllcatfons cannot be w￿l¢ted even wfthln familie& Many peoNe vmh NF1 also have lowseff-esteem and this can cause problenL8 fomilng frlerKlshiF4 ￿lch leadg lo IsolatlorL NF2 ¢onsbtently causes more problems than NF1, and it has an in￿eased rtsk of developlng brain tumours. AlthO￿h these tumOU￿ afe benign, the ¥Thltlon in ￿1¢h they grow can cause major problems. The most common site E on the hearing and ba￿n￿ nerves causing problems Mqth dea1ft￿ and o)ordination. The sense of isolatlon from deafness onset In adulttKK#J be immerEe. Peo* wtth NF2 may also develop spirK31 cord tumOU￿ their own stwifkant cOM￿l¢allOnS. NF is an unpredlctable and variable genetic condltlon that can affed all people regardless of gerKler. race or age. Durlry their Ilfetime, patients may see a ￿lde range of health arKI sodal care professiona15, tth In ¢xJmmunty and hospital settAng& The Specialist Palvisors act as a point of reference for famllles helping them navigale through rouiine planned events arKI at times of Essenlialy. their role is to help ￿Ople to learn to live with Ihelr diagnosis of NF arml to equip them with the knovA* ol wthen, ￿ere. hthv to sed( help. rf necessary. As a multFsystem Cl￿dillOn. NF has an impad on niany areas of peopk's lives. notjust health. The Specialist Advisors take a lead role in liaison and a0￿ with health. education. and sodal Se￿iCe5 to support the qualty and continuty of care for frdmlies affeded by NF. They seek to develop a servlce that s professlonal. timety and resp)nsNe to need. Their settiTrJ may Ix dlnlcal. visibffJ fam￿leS at home ortelephone a)ntact. The quaffity of the relationsh1￿ they estabtsh is critlcal to ther effediveness and may continue over many years FAnanclal Revlew Income Generatlng Acthiltle8 Our head offi￿ team conlinue to develop Innovative vffiual fundraBing ￿eaS arKI Sour￿ new IrMx)me streams at every oP￿)rtun￿. During the period Ihe charty had income resources of£487,431 and a total expernltiure or £485.887. resutting in net resources of £1.544. Ttms has resulted in total funds of £648,617 belng carried forward. Of trffj figure £21126 is restrfded to projects as specified by the temis and conditiorts of ￿rtain do[￿lI0ns. Of the balan￿. circa 80% although ￿reStr1ded. is The Neuroflbrorntosls As8oclatlon Report and financlal statements Notss to the financlal Statements forthe Y￿rended 31 October 2024 atready de8kJnaled expenditure, due to the number of multl-year SE￿AllS1 Nu￿e contradual commttments, employee and head office contrdCt& Inve81ment PollGy The Ch￿Ity'S fund8 have been Inve*ed in a mixiure of one year ftsits thls financial year. The Flnancial Athi80ry a Inveslment Group. estatli5hed In late 2Q reF￿111¥j to the Board of T￿￿tee& continue to review this FK)sition and further investmert opportunities. to ersure all income potential Is maxim*e¢ wilh mlnimum risk We glve careful conslknatlon as to h(M￿* can make our reseNes genernte wt income for the d￿rty and ￿ve considerwj a number of orAtO￿9 and infomial At presen( the alrrent rate of rdum. the invofvè In invesllng. and the inherent have c)￿an¢e wthh FRS102 and the chanty SORP (FRS 102). The Trustees must not apprne the finarKMal Slatefflents urfe88 they are salisfied that they give a true fatr view of the stste of affairs of the chafity * the end of the fmarwl year and of ts surylus or defiat for ttr￿t perfod. In dolng so, the Tiustees are responslble for. Seledlng surtable accountlng p)licies and then apply them consBtenty; otseTving Ihe methcmls and Principles In the Charittes SORP; making judgements and eslimates that are reasonable and wud preparing the financlal statements on the going concem basis unless It is approprfate to assume that Ihe mpany wlll conllnue on that trAsts: and the malntenartt and IntvJrtty of the c4rporate and finandal Informatbn Included on the th*tsfte. The Board 0fTrU￿eeS Is i08￿rnIt48 for malnta5n1￿ accounllng r•￿rdS vknich (fffjdI￿ with reasonabl• ac¢aJraq at any Ilme that the flnanclal statements (wty the Companles AIX %K16. The Board of Tr￿ee9 * also responsible for safeguaNling the assets of the chaiitable ¢￿panY arKI herKe loi takirYJ reasonable steps for the preventlon and detectlon of fraud and other IrregularltleB. Mombers 01 th• Board of Truslee• Member8 ol the Boafd of Trustees, are directors ft)r the pur¥*)se ol ry)mpany law, and T1￿$t888 lor Ihe pJrpc8e of charlty law, 8erved durlrKJ the year and up lo th date of th￿ report, are Set on page 1. Small ￿MpanY provlslons Thls report ha8 been prepared In accordance wkh the 8peclal provi8ion8 for small companies under Part 15 01 the Companles Act 20￿. Approved by the Board of Tntstees on 03 March 2025, arxl signed on Its IxlAII by: Rlchard G¢x>de Chalr of the Board of Truste & COMp￿Y Secretary Jonathan Bruce Vlca Chalr TvwougS The Neuroflbromatosls Assoclatlon Report and flnanclal statements Notes to the flnanclal statements for the year ended 31 October 2024 Ind8p8ndent Examlner8' Réport to the Trustee8 of Tha Neuroflbromato818 A83oclatlon NeNe Tumour8 UK) I report on the 8ccounis of the company for the year ended 31 st October 2024, which are set out on pages 10 to 19. Respectlve raspon8lbllltles of trustees and examlnar Tho trustees (who are also the directors of the company for the purposes of company law) are responsible for tha preparatlon of the accounts. The trustees consider thal an audil is not requlred for thi5 year under Part 16 of The Companies Act 2006, section 144(2) of Ihe Charllles Act 2011 (Ihe 2011 Acl) or under Regulalion 10(1)(a) to (c) ol the Charities Accounts (Scotland) Regulations 2006 ('The 2006 Regul81ions') and that an independent exarnination Is needed. The charills gross Income exceeded £250.000 and l arn qualified lo undertake the examination by being a qualified member of the Association on Chartered Certified Accountants and11 is my responslblllty10: examlne the accounts under sectlon 145 of Ihe Charilles Act 2011 and under sectlon 44{1)(¢) of the Charities and Trustee Investment (Scolland) Act 2005 (the 2005 Act): lo follow the proCedU￿S laid down in the general Dlrections given by the Charlty Commlsslcn under 8eCilon 145{5)(b) ol the 2011 Act; and to State whether partlcular rnatters havo Gorne to my attention. 8asls of Inde endent examlnetg r• ort My examinallon was carrled out in accordance wilh the general Olrections given by the Charity Commission and Is In accordance with Regulations 1101 the Charities Accounts (Scoll8nd} Regulallons 2006. An examinalion Includes review of the accounting records kept by the charlly and a comparison of the accounts presenled with those records.11 also Includes consideratlon of any unusual Items or disdosures In the accounts and seeking explanations from you as Iruslees concernlng any such matters. The procedures undertaken do not provide all the evidence that YK*uld be requlred In gn audit and consequenlly no oplnlon Is given as io whelher Ihe accounts present a 'true and falr vlew, and the report is limited to those matters sei out In the siatement below. Independant examlnerfs statement In connection wllh my examination, no matler has come io my atlenlion: (1) which glves rne reasonable cause lo believe that In any material respecl the requirernents: to keep accountin9 records in accordance with seciion 386 of the Companies Act 2006 and sectlon 44(1){a) of the 2005 Acl and regulalion 4 of the 2006 Accounts Regulalions; and to prepare accounts which accord with the accounting records, comply wlth ihe accounting requlremenls under Secllon 396 of the Companies Acl 2006, sectlon 44{1)(b} of the 2005 Acl and Regulatlon 8 of the 2006 Accounts Regulations which are consistent wilh the methods and principles of ihe Stalemenl of Recommended Prac￿Ce. Accounting and Reporting by Charities (SORP FRS102) have not been met; or {2) lo which, in my opinion, attention should be drawn in order to enable a proper understandlng of Ihe a¢￿￿nIS to be reached. Siobhan Glenlster. ACA For and on behalf of Davld Howard Chartered Accountants 1 Park Road Hampton Wlck Kingston Upon Thames Surrty KT14AS Oate: 3nl March 2025 TUklLWP% The Neurofilxomatosls As8oclallon Report and financlal stateThnts Notss to the financlal statements for the yw ended 31 October 2024 Statement of Financial Actlvitlos (Includlng Incorn & Expendlture Accounts) forthe Year ended 31 October 2024 Total funds 2￿24 Total nds nds 2024 funds 2024 Donations & Legacies Income from Charit Acllvitte9 Investment Income SXI.204 11r2,750 401954 368.155 4,180 71.163 13,314 1,1K2 8,091 13,314 Incoming Resources fmm Charltable Actfvit￿s 3KI.SM 106.9JI 487.431 Other Incomlng Re80Ufces Tolal Income 3WJ01 106.9x1 487.431 Expendits Cost of raisirg funds 114,890 114,890 102,689 262,221 108,776 370,998 321.975 Tolal Resouyrns Expended 377.111 108.776 4￿887 t Income 1ExFwKll￿re) 31.744 Reonclllallon ot lunds Totsl fiJrKls W foTward Net movement in funds l¢x the year 8rJ.101 23.9T2 647.073 615,329 (1,846) 31.744 648.617 The statement of financial aclt¥ities w￿￿leS all a￿1 losses in the year. All incoming resources and resowces 10 IWOUR5 The Neurofibromatosls As80clatlon Report and financial statements Notes to the financial statements forthe yw ended 31 October 2024 Balance sheet as at 31 October 2024 2023 Tangitle ￿ed ass&s 10 1284 757 Curmt au•ts 11 14,352 720.194 734,547 13,482 787 928 801,410 Cash al bank and In hartd Creditor8 . amounts falllry du• thln one year 12 88.214 155,094 646,318 Analy¥ls ol net awts belween lund8 Unre8tri¢ted fund8 Restrlcted fund8 Total lurKt• 13 6%.491 22. 128 823.101 13 The charitable company is erthled to exemFllon from awjil under SKtkn 477 of the Companie8 Ad 2006 for the year ended 31 Oclober 2W24 telating to small com￿nIe& The tW8tees have not requir•J the chwitat4e comFqny to otian an audlt ol Its finandal sLitemerts for the year ended 31 Odthr 2024 In acCordW￿ 476 of the ComFAnies Pd 20C6. The tr￿tee8 aGkno• their r¢8F*Mlbililie8 for comth'ffj the requirements of the Companie8 Acl 2006 wlth regt*ct to acc¢)urrting re￿rdS *d the of The firranclal statements are prepared In a(rothnce ￿ the speclal of the ComFqnies 20C6 arml seGtion 138 01 the Chaiitles Act 2011. These accourts are Fyeparal In a￿CIdanCe the Financial Rep)rtlrvJ Standard appknble in the UK ar#J Reputlic d Iretsr¥J (FRS 1Q2) (eifectNe 1 January 2019) - (Charfttes SORP (FRS 102)). The notes al rAge6 12-19 form part of these 8ccounl8. Approved ty the Boa￿ OfT[￿teeS on 03 Mwch 2025. G￿n*j on its t*hall ty. Rlchard Go(xle Chalr ol The Board of Tiu & Company Secretary J(mathan Bruce Vke Chalr Company RegAtAlion No. 03798407 Charfty RèJlstration No. 1078790 Scottigh Charity Register No. SCO45(￿1 11 ux The Neurofibromatosls A8soclallon Report and financlal statements Notes to the Ilnanclal staternnts for the year ended 31 October 2024 Accounllng pollcleg The Plincipal accounting poliae5 are summarised below. accountlNJ policles have been app￿￿1 co￿&$tentIY throughout year and the weceding year. Basls ol acc4)unllng The finanwl statements compty vthh the Charitles 2011, the Companles Act 2006. Tn Inveslment (So)tland) Art 2005. the charities Accounts (Scotland) Regulations 2006 (as amended), the MemoraThlum and Articles of Assodatlon, arKI the Charilks Statement of Re¢ommendaJ Praciice {'Charltles SORP.) {appli¢able lo charities prerAring thetr accounts in accordance wilh the Flnanoal Reporting Standard appfjcabte in the UK arttl Republio of Ireland: FRS 102) effei*ive from 1 January 2019. The Neurofibromatosks Association meets the definitton of a publK benefft entty under FRS 11Y2 The financial siatements are prepared in sterfirKJ. vthlch * the functional ojffenq of the Charity. Monetary amounts in these financlal statemerts are rouThled to the nearest £. The finanGial statements have been prepared under historical ¢x6t corwentiory mojified to inGlude the revalualion of freehold properlies aThl to indude Inveslment propertles aThl certain firwiclal irslruments at fair walue. The prinGry>al accountir¥J w￿rIeS adopted are set out below. b) Fund accountlng Unrestricted funds are available for use at the dscretlon of the trustees In fwllwance of the general otrlectfves of the Chaflty, and Restrlded fijnds are subjected to restriGtions on their &YWKliture ImF#xI by the donor. Income All incoming resources are inCl￿d In the statement of financial arti¥ities *then the tha1￿Y Is entttled to the In￿rne, and the amount ¢an be quantifi￿1 reasonable a¢curacy. The follthvlng specific pollcles are applied to partlcular categorle8 of Income: Income from donations arwj legacies is recelved by way of gran￿ donthns, fundraBing arKI gifts arKI is Induded in full in the Statement of Flnancial Activiiles *then r￿e1Vabl& Grants. ￿ere entitlemert Is not condrtlonal on the delivery of a speafic performance by the charity. are reccgnised ￿then the charity becomes uncon(h7i￿aI1Y entitled to the grnnt, The value of services wovided by Voluntee￿ has not been Induded in these accounts, Income from charitable adivitles are accounted for when eamed. arKI Income resoutces from grants, where related to perf0mlan￿ and specific delnierables, are accounted lor as the chanty eams the light to consideration by Ils ￿￿f￿Ce. There has been a charvJe In the ac(x)untirvJ poli￿ for Lifet•me Sut6criptKMts from 2010111. Henceforth income resources from lifetime V•ill be fulty accourtsl for in the year In whlch the subsCri￿10n Is registered. d) EXpendI￿re Expendllure is recognkned on an acc￿￿ ba515 as a llatAlity 15 incurre(L Expenditure indudes any VAT Ythlch cannot be fully recOV￿ed, arKI is reported as of the expenditure to %%thich it relate5: Costs of raising funts comFme the cos15 assotiated ￿1th attrading yo￿ntary incomq and also include govemance costs. These include those costs wjciated with meelirvJ the constituiional and ststutory requirements of the charlty and indude Ihe Indep￿dent examination fees and costs lIn￿l to the strategic management of the charity. Expenditure on (*aritalJle aci1vil￿ Compl￿ those c¢￿ts inCUr￿d ty Ihe charty In the delivery of Its adivities arKI services for ts beneficiaries. It includes bolh costs that can be 12 ux The Nwrofibromatosls Assoclation Report and financlal stateme Notss to the financlal statements for the year ended 31 October 2024 allocated dlrecaly to such adivitie8 and those cosls of an irKlirect nature r￿cesSary to support Ihem. All costs are allocated bthen expend¢ture categories of the SLitement of Flnand81 Activtties on a bass des ned to reftect the use of the resour￿. Depre¢iatiorL Assds are ￿Itten off over Iwo years on the straight line bxls of deweaabon. e) Flxed Assets Tanglble fixed assels are initialty ffleasurexl at cc6t arKI subsequenlty measur&J at cost or valuali¢)n. net ol dep￿CIatIon and any im￿lrMent Ic6ses. IndNidual fved assets COgtlrwJ £250 or more * capt*&J at cosL Depreclallon: the value of each asset Is witten off over year4 on a stralght41ne basis. Golng concern At Ihe time of approvOrwJ the finan¢>al statementy the Tfustees have a reasonth ￿peCtatIon that the Chafity has ad￿uate resource9 to conlinue in qwalthl existen￿ for the foreseeable futu￿ Thus, the TnBtees contlnue to the going concem of a¢£ountlTrJ in the financial statements. g) Debtors Trade arKI other debtors are re¢c¥nised at the settlement amount due. h) cr￿lItOrS and provlslons cr￿rt0Tr and Pr￿lOn$ are recognised wlwe the chaiity has a wesert oblvJ*n resullirg from 8 past event ttrAt will probably resuft in the transler of funds to a thlrd party the amount due to settle the oblpJatlon can be measured or esttrnated relialjty. Creditors ar¥J provislons are normally recog￿￿￿1 at Ihelr settlement am¢)unt. i) Informallon and legal sta￿3 ol the ¢harfty NeNe TuMoU￿ UK Is a Charitable C¢mpany, Ilmited ty guarantee, incorwrated on 30 June 1999, and regISter￿j as a charity on 5th January 2000 (prevthtsly 284653 registered 1982) v&h a membership bage. The company was establlsf*d under a MemoraThlum of Asso¢iallon, ￿1¢h estsblished the obieds and of the charitabl¢ company and Is govemed under its Artides of Assoctalion. In the event of the company being wfjund up members are required by the adopled Constitutlon to conlribute an amount not exceedirKJ £1. J) Penslons The pension eosts charged In the flnanclal statements represent the conlrltArtlon payable by the charity during the year. ContritJutk)ns are made to defined contrilxrtlon schemes In the 13 TVIIQUNS ux The Neurofibronmtosls Assoclatlon Report and flnanclal Statements Notes to the financlal statements for the yearended 31 October 2024 Income Unrestrlcted Restrlcted funds funds 2024 2(r24 Total lunds 2024 Total nds a) Donatlons & Legad•s Donations and gffls Events Glft Ald Grants Legacies SutfjrAl￿lons 54,653 127.552 33.140 28.600 50.231 6,028 54.653 127.552 33,140 131.350 50.231 36.089 120.189 24.164 104.3 101750 5,962 101750 4(r2,954 368,156 b) Income from Charltabl• AGUvltles FurKlrai5ir Goods for Sale 4,180 71.163 80.162 4,180 71,163 80,162 c)Inve8lment In(>om? Interest 13,314 13.314 8.091 14 Iumtr￿￿S The Neurofibronmtosls Assoclatlon Report and financlal statements Notss to the flnanclal 8tatsm8nts forthe yw ended 31 October 2024 3. Grnnts Unrestrlcted Restrlct luftds fund$ 2024 2024 Tolal lunds 2024 Total lunds The Gracé Trust The Peacod( Trust The Childwick CPAritable Tntst The Three Oaks Tn*t The NoTman Family CharlatAe TnAt The Baron Davenport Charity The Schon Charttable Tn*t The Slr James Rolls Charitable Trust The Eveson Charitable Tnjst The Hllary A￿llry Charilable Tn*t The James Foundati onymo Alexion Pharmaceullcals UK st Judeb T￿t The Slr John & Lady AM￿ CtHritsble TAAt The Claire Milne Tr￿t The Roger & Jean Jefco* Trust The t)tsle R¢xe Flndlay Chartt8tAe Trust The Cuthl￿rt Hom Tnmt The Pears Foundallon The Hopkilts Charitat4e Foundation The Hadrfan TNst The PF Edvrdrds Charilale Trust The John Avins Trust The Roger & Do￿189 Tumer TnAI The Thomag J Home M￿n01￿1 Tnffjl LSEG The Sheffield Ttrlm Trust The Woodhall Chaitatle Tntst The tyoyly Carte Charitable Tr￿t The CGD Society The Bur21 Famity Charilatle Trust The BCH 1971 CharitatAe TnMt The ISED Foundation The Stockwell Cliffe Tr￿t 750 5,000 10.000 10,000 io.(K)o 1.CM)O 10,( 1,200 550 1,250 10.000 500 500 8.000 10,000 40,000 40,000 1,000 300 15,000 5,000 10,000 10,OIXI 7,000 700 1.000 4.000 2,000 4,000 1.CrfJO 6,000 100 5,000 750 20,000 750 20,￿0 1,CKIO 28.600 10 750 15 TWIOURS ux The Neurofibronmtosls A880clatlon Report and financlal statements Notes to the flnanclal statements forthe year ended 31 October 2024 4. Expendlture Co8tolral* fvnrts Holplkno Volunlary Tnmts Gty••m•nc NF Costs dlr•ctly alloeatod tr• aetl¥hl•* l*nd¢nt Exanth¢r F Indep8ndt4rt Ex•nlMr F•• for oth•r 2*04 Fwthknlr 23.827 3¢1riJ 61,787 144458 145,456 H•lpThM 8 CNnk•18ipport NSA 117,8BS 117.08S 401x1 R•sMrch 117885 4)2 153 Irt co￿5 allor•tod t••¢t1￿￿•8 2.1 150 3.154 31.247 2.197 51.199 4J1 DI￿11¢)￿ 127 187 1.235 U85 125 481 12.232 2.878 XlJ42 129 IT. tshphon• •Tra fax >)1 117 2.8 4883 TJ4 Total 8tsff Colt OepTKknffion 16 Ivmouws Report and Ilnanclal statsments Notes to the flnancial stalements forllw y￿r ended 31 October 2024 S. Nat Incomlng Resources for the Year Thffj is stated after tharges: 2024 2023 Depreciatlon Independent Examinallonl Audrt Fee 2042 1511 24CM) 3911 Stsff costs and numborn 2024 2023 Salarles arwj wag Social se￿rity 219.175 14,051 199.310 11.739 21 No employees recelv•J emoluments of more than £60.IXJQ The charlty opernt¢B a pen8k>n stheme lor its employees. as Gurrerrtty rnquirexl. Th• avwage number ol em¥W year. ￿￿ted on the c¢ wuivaknts, vms as foll 21r24 CEO Membership Secretary ITllnlormatkni FundratslTrJ Specialst Supr ChaThJe mawer 23 0.6 0.6 0.6 5.0 5.0 Trustee remunrfatlon No mernt￿rn of th• 8o8rd ol T[￿leeS rwxNed any ftynunwam (x ￿per￿. dur1￿ the year year. £146.14 was relmburned to one member of the Board ofTru*ees). There ￿e no Rela￿] Party TrdrnadkTh the pr. No Tntstee, cr (*her pernon related to the tharty, had any pernonal iTtteRst in any tran￿dIon. Taxatlon As a charty, The NewofitYomal(ts* AS￿latI1)n Irom lay ¢)n in¢on* gairo falllry vAlhln seclion 505 of the Ta(es Act 1988 ors256 of the Taxallon of Chawtle Galrs Ac* 1992 to the exlent thatthe8e are applled to its charitable obieds. No kx ¢• have arwi in Associthn. 17 The Neurofibronmtosls A89oclatlon Report and financlal State￿￿ Notes to the flnanclal statements forthe yw ended 31 October 2024 10. Tanglble flxed a88ets 2024 2023 8 811 November Addttlons Removal offulty dewlated 11.636 10,121 1,515 As at 310(knt•r Accumulated d•pr•clatlon AB at 1 November Charge for tP* year Removal ol lully depredated 10,879 3.042 9.268 1,511 As at 31 Ortolxr Net book value at 1 November As at 31 Octot*r 757 754 757 11. 2024 2023 162 Rent Depxii Other debtors Prepayments 11 CredltoT&" amounts lalllng duewlthln y•w 24 2023 Trade Crerfrto Taxation Lottery Grant Other Creditor9 Accruals and deferred income 15,427 4,791 E2,133 4,661 20,587 18 ¥ur4OV45 Report and financlal statements Nths to tho flnanckl statsmonts fortho yarendod 31 October 2024 11 Andysls of net assets fwds Unrnstrlthd R86tr1cted Is funds Total nds Tangible ￿ed Current assets Currert liabilities 2,284 734,547 711421 22.126 626 491 22 126 ￿617 Movement In funds At1 Novents Incomlng Outgolng At31 2024 Restrlcted Funds Support GrouF6IMedical Inlo Days Researchlspecialist Supp)rt Awareness Campalgr NF2 AdNities 1744 1377 15.000 76.930 15.OIXI 13.744 79.250 15,0(10 5,000 1,057 23.972 1C6,930 108,776 22,125 Unrestricted Furnds 623.101 380.501 377,111 626,491 Total Funds 647.OTJ 487.431 484887 648.617 Puw of Restrfded Fund6 sup[￿ Grourtslmedical Info Days: fvrKlirg festricted for expenditwe on Medical Inf￿n*t1¢)n Days ResearchlNSA'& NF2 *ivitRs: Awareness Campaigns: fiJTrJirvJ restrwAed for exFeThJiture on NF2 athibes funding restricted for expenditure on informallon campaigns 15. Flnandal commltments At 31 October 2024, the chaiity had annual Mmmlments uThJer norb¢anGellaUe operating l&ises. follohffing renl renegotiatK*ns. as follm: 2024 Explry date: Not later Ihan one year Later than one year and n(* later than fve yea 12.fJX) 19 TVw￿￿%