The Neurofibromatosis Association Report of the Board of Trustees Year ended 31 October 2021 Charity Registration Number 1078790 Scottish Charity Registration Number SC045051 Company Registration Number 3798407
The HrOfibr0rnat0sIS Association Report and financlal ststements Year ended 31 October 2021 Charity Name". Charrty Regi8tralion Number. 1078790 S¢otbsh Chanty Registration Number. SC045051 Company Registration 3798407 Charity Worknng Name: Nwve TwTh)urs UK Registered office and OFerational address." 20 OL4 Telephone: 020 8439 1234 020 8439 12fy) E-mail address: Website address: NeN• Tumours UK Nerve Tumours UK is the VIrking name ofthe tharity. retains its legal name'The Neurofibromatosis Association.. (Prior to 01 November 2018. Ihe wrrfking nane was The Neuro FoUThjat.) Board of Trustees The current Board of Trustees Is: Michael Fry (Chair) Dr. Timtslhy Com Emily Owen Stewart Lee Ri¢hard Goode Ivice Chair) Profe$sor Rosalie Femer Jonathan Bruce Rohan Chanmugam Professor Meena Upadhyaya matth J¢)ne$ Senlor Management Personnel The trustees delegate day-t(aY man4effnt ofthe charity to." Karen C¢xkbum, Charty Director Patrons Gillran Anderson Simon Callow Davkl Howard Chartered p£c(tarts 1 Park Roj Hampton vd[ Kingston- Thames SLsrrey KTI 4AS S Market Pe Surrey lff11VX
The Neurofibromatosis Assoclatlon Report and financial statements Year ended 31 October 2021 Board of Trustees Report for the Year Ended 31 October 2021 The Trust are pteased to presenttheir annual rewt and fmancial Statem the year ended 31 October 2021. The financ stements wilh the Charilies A& 2011. tr Conynies Act 2006. Trustee InveslnTrnt {ScoUand} Act 2005. the charities Accounts (Scotland) Regulalw)ns 2006 {as amended). the MemorandLtm and Articles of Association, arKI the Charibes Statement of RQmMerK1ed practi I'charibes SORP'I {applicable to chariknes preparing their accounts in accordance Wth the Financial Reporting Standard appltcable in the UK and Republtc of Ireland: FRS 1021 effeLtre from 1 January 2019. Objectives and Athloes The charity's vision is ryrove the fr4es of those affected by NeUrOfitolS'. To allow the chafity to deliver ttws vision of helping to improve the Itves of those affected by Neurofibromatosis {NF}, and in being central to makn.ng thi$ happen. we rJrk in ccAlaboration the Highly Specialised Commissioning Setvices, forn the National Commiswning Grw (NCG) funded serv. and other assc¥>ed medical professional unts arolK1 the UK. The mission for the charrty is to'Enable people concemed 8boLrt NeurOftrat0siS to find solutions appropriate to the by increasing awareness. and by providwvJ supp(rt and inforrnalic&n on Neurofibromatosis.. Central to this mission, is our ambbt)n to be the UK'S authclIaye voice on Neurofibromatosis and our detem)ination to serve, support and celebrate the INes of people wnpacted by the nd1knOn, and the wider support The charty continues to deliver its missiNb throuh fve key services to memws, supporters and berficiaries. It ereavOUTr to: Inform We provide accurate. relevan( and up to date infOnn that explains the condrtions of NF1 and NF2. the implicaiions, challenge5 and opportunthes, in language Lbnderslood by Advis V4e provide wactic ar em(rtiwl advice to W pe> fmd the best services and supwt availabk. We enable pIe to make cho5 aboLrt huw Ihey approach and live V+ilh neurofibromalosts. We aim to increase knthedge, wKareress and underthnding of NF. and w7N campavJn for change in aS we believe will improve Ihe INes of those affected by neurofibromatosis. Connect We lake a pithl role tcgettw groups of pecple interested in neuroftbromatosis to mwmise the SUppt and available to t. Fund We rrrake fvnds avallab* for small Fjects to tKKlies arKI patient groups Mthere we believe 11 will make a differerKe. The charity works Mryth the follcmryng groups to &hieve ils Missic.. Patients and carers Families wrth neurofibromatosis The medical community NF Specialist NeOrk of Nurses and Adv The research (parts"rAtsrty The Nerve Tum¢ws UK med81 Advw Board) Supporters Volunteer5
The Neumfibromatosis Association Report and financial statements Year ended 31 October 2021 Other chariltes arKI umbrella organisations Achievements and Perfomwnce Although hindered by the CoMd-19 pandemK for the latter 19 months. encompas%ng the whole of the last financial year, the charty has continued to coentrate t its ¢entrJ fve services again thi8 year. The pandemic does not detract from working to Strengthen and develop our core support StrUreS to ensu tlwt v can continue to provide the best possible Sup and infomiation to anyone affected by NF. However. our servtces contsnue to be 3ubject to increased demand, due to the un¢wtain Crnate and the abse or drf[ty in ¢JM"ning primary we services. AAhough face to face consultattr)ns gradualty retumed. ffrany of our s¥1 were provKled virtually or by telephone congJWion. Impact of Covld-19 on Charity Sorvices & Finances We fund 3 unique arKI vitsl se, vthich is not provFded by other nallorts. Our seFvKes are parhcularly important for Peop diagnosed wth NF and their carefs. Many people with NF are vulnerable and often isolated. They continue lo be immensely distressed by the rJJrrent gAtuation, as of their complicaOnS may make them more susceptible to catching Cow¢J-19. Many have to shield. The effect on the broader group of people with NF continues. as there is a huge bacthg of appointments as many genetbcs and neurol¢yJy clinics had been significanly reduced as staff have been redeployed to uiical and Covi&19 services. We have therefore continued to roll out virtual semces to ensure that we can continue to reach and supF(Jrt our beneficiaries. We are aculety aware oflhe ongoing pola1 impact on menlal heallh both our benefiuaries and our staff. We do not receive statutory or local fijnding. and the bulk of the tharity's income ha5 been from Charitab giving and monies raised from events. For a second year, nearty 1 evenls Te erther ty)ned or ¢ancelled. which has had a signrficant advetse effect our income streams, and were ncrt abte to access any emergency fijnding this year. However. we continue lo fijndrnise as much as possible new. innovalNe. and virtual inib'ives. We maintsined our decision nol to furb)ugh our staff a$ considered that all staff memtws Ere needed in wler to resource and maintain services, and to continue fundraising inrb"abves remotety. Our continued assessment is that our strategy has been appropnate arKI. as su¢h, has alld us to make a smal suWus in the Irrent finarla1 year. As we fijnd a network of Spea81ist NF Nurses and Athisors Isrecolist AdvisoT5), our wlicy reqreS us to maintain a minimum of 12 mnths of reseryes. The charty reacted quKkty to the constraints ofthe pandemic and the resultant ewnomic cbmate. This has minimised the impact on the level of reserves over the last financial years. At this time, we are ¢onfKlent that are able lo to rnarfa our reserves pyicy. Plans for Future Sustainability The pandemic forced us to recorts*tser Lwr strategic plan. The Board implemerrted a strategy group lo look at how we can continue lo provide our services. in a post Covhd WId. Our focus 1$ on can streamline our seNices. eordInate our work with partners and inyrove the edUCan of the medical profesSA. Our aim is to ensure that people are able to access advKe as effe¢b effi• as p05sible. vhlether not that is from the chanty. The chanty has also adopted new ays of ing. indud1r vwlual clnrs. Altr9 Mline servFces are nol practical for all (for exampte, patients with cognitive impaitment and leamin9 issues). we anti¢ipate that improved online connectivty and familiarty may lead to reduced delrvery costs aThJ greater effie4ency. Post pandernic, we anticipate that a baL3nce of online and in pefWL delivery alow the thaiity to prowde 5eNices to more people. Speclallst Advisors The charrty wll o)ntinue to maintsin ts Specialist AAfvisots aThJ seek to identify weas ofthe county wthere we can w)rk wth the NHS to make iobnt apw1ntrnts.
The Neurofibromatosls Ap•sociation Report and finanelal statements Year ended 31 October 2021 The chanty CLtrrentfy funds a neh¥ork of Iwelve Specialist AifviscKs across the UK. supporting posts in NevKastle 12), Bimiingham121, Ptymouth, Liveryy)ol, Southampton. Sheffiekl, Leeds. Wales and Northem Ireland. Two Specialisl A(fvisors provide the NeNe Tumour5 UK nabonal helne on a part time basis, vthich provbjes advice arKI connects people affected by NF relevant practical 1p. eiitier in the communtty, or in dinic. We aim to introduce hvo new posts during the next financial year in parts of the UK. there has never been any regional SLFPPOrt. Each post supports bet4w 21X)- 3,750 Pati pw yw 1)rkl9 via dinics. home vtsits, schools. advisory servtces, and telephone consullakn. The role of Specialist Advisors is very dNerse. We have had excelnI feedback from the faMie$ supported by our Specialist Advisors. It is plain to see that for those famrfie5. the support they recesve from the charty and our Speaalisl Adwsors is ptvotal in helping them to cope 1th NF. SupFthI"ng the Spe(#ist Advisor5 nefvrnk will contsnue to be a key role for Nerve Tumouts UK. Over 60% of pabenls with NF1 will have leaming dnThuJtt, and approximatety 30% are Tegistered a5 disabled. as are 75% of those patients with NF2. However, pulAtc avoreness of NF is low. Our experien is that this can lead to some people wrth NF 8twggling at schcol, wilh inappropnate. or noTrexBtsnt support Nerye Tumours UK offers a schools, advisory serv, iNFomi. siaffed by our SFecialÈst Adwsors. Tr1ere engaged, the team works dosely with teachws. supp(Jtng tailored leaming pkns. WKI suggestir¥J mechanisms for enhancing the chikl's expellen at school. Even durÈng the pandemic. we have fwnd stdl operate iNFM eff&tively, albeit vwiuaI. Nee Tumours UK continues to offer an exiensNe range of literature and irrf0mI0n. for lay people and professionals. Our literature is w(lety used by medical teams across the county. Our leafiets and pamphlets we subject to constant review and update. Med1 professii)nals are also invited to use the Nerve Tumours UK national helpline. The Nerve Tumour5 UK Head Office team contmue to YJrk excepts1 hard. They conts.nue to yo atwe and beyond in SpOnSe to the continuing falkut from the pandern. and the Board are On again very greful for their efforts. Key Nvorkstreams have included the furtrw deveknpment of our websFte. in partlar the sections on partn charilies, government Covid-19 a¢fvice, menial IEallh. ¥J research. We c(mtsnue to see a surge in actsvity on ourvrtisrte, ar this has greaty increased our interacttons and the support available lo the communty. Facebook coverage and engagement has continued to gr(. Over 71,500 people are reached organicalty ea¢h month and ow page VWIS are up by 145%. Our wpbsile achieves an average of 45.000 user5 per month, wrth 61,262 in December 2021 abne. Nerve Tumours UK'S TVer reach contintses to grow steadily writh 1,497 foll0vr$. Our ets make an average of 248.000 impressions per month. Our Instagram reach is also increasing, and V now have 1.800 followers. The number of SubberS to the Ner¥e Tumour5 UK has weased to 3.042. an ireaSe of 17% on last year's count. We continue our memberslip of a number of other soual and matheting branches such as hneetup groups. which directty tsrget our challenge events outsi(Je the community, atNI * 173 membws. we are reaching a wider audience than befo. On Wodd NF Awareness Day in May 2021, desptte lockdovm. total soryal media posts on the respective NF1 and NF2 Days led to the highest of xtNilJes acxoss social media and the web during the year. We also contlnve to seek to devdop and Streth cmjr HtU1 partnershps wilh ¢Nganisations IndUdw The Small Charth"es Coalition. Embracing CompXIty. Geneti¢ AM18r, and Gerth DisNders We have started planning for conferences. events and (wtreach in 2. There are no immediate financial corbcerrts. atthwgh Ihe length of Iks¥M and the continuing pandemic may cause some concem, Nerve Twnours UK is stim Curr* on track to meet ils lowtem) financial targets. The continued rolloLrt ofcore seThtes lknighout the Femd is an exollent reffeCti ofthe combined efforts and dedicalion of the Specialist AdvistNS, our members. SuPpters, head Offi staff and MedKal Advisory Board during this unprecedented time. Trustees are very gralefid forthe eXceptionty hard w)rk has b8en put into the
The Neurofibromatosis Association Report and financial statements Year ended 31 October 2021 structure, Governance and Management Nerve Tumour5 UK is a charitab Company. limiled by warantee. irworaled on 30 June 1999. and registered as a chaTty on 5th January 2000 (pVIOus 284653 registered 1982) with a nEml)ership base. The company was established under a MemLYandum ofA%lati, which estsblished the obiecls aThJ PU•¥ets ofthe chantae company and is govemed under its Artides ofAsso(yakn. In the evenl of the company being wound up members are quired by the adopted Constllutn to contribute an an))unt exceeding £1. The directors ofthe company are also charity tTuslees forthe purposes ot charity law. and under the company's Articles are knovm as members ofthe Board ofTrustees. Tr Board of Trustees meds at least four tsmes a year and is responsible for the strategic dwection and policy uf the tharity and appunting auth1$ to ensure financial complian. medic input is given via ow AdvÈ50ry Board. a rewesakn ofvthi( sits on the Board of Trustees. Medical Background The charity's membetship is mosty drawn from families affected by NF. There are two types of NF. NF1 affects 1 in every 2,500 peOe w0¢je, N4thtch means that there are more than 25.000 in the UK. NF2 15 much rarer, with 1 in 35,000 affected woikfvdel1,ooo in the UK). An affected pwson of eilhw sex has a 1 in 2150:50} chance of passing the anered labnormall gene on to th8ir children. H¢ywever. evone has a risk of having an affe¢ted chd because 50.kn of all those affected by NF are the fwst perw in their faThuly to be 50 affeGted. NF1 ts a hugety variable Cond"0, vknich has tl pote¥rtKal to develop a large number of eomplieations. Some people with NF1 only having sknn inv¢Jlvemen( but potential complications IL1e.. specifK leaming drfficulties and behavioural woblems- vthich affeds about 60% of all peopte ¥th NFI: high tdood pressure {hypertension)'. curvature of the spine {scoliosisl'. maiformth.on of the long bones {belcAv the knee and belthy the dbowl (pseudarthrosisl," large benign skin tLtmours Iplexrfom) neuroft•romasl', tumours on the nerves of yght loptic glioma}.' intern, spinal and brain tUrrrS-fftth a usualty benwJn hcNRver 1 Lk15% of pelv will develop a malignant tumour related to their NF1. The nKJSt gnIFcant i%sues people wrth NF1 is that the oc(yJrrence of these complications cannot be predicted even within families. Many p[e NF1 also have bjw seK-esteem and this can oause probtems fonnwKJ fri&shIps, whtch teads lo isoktion. NF2 causes consistentty more problems than NF1. artd rt has an tn¢reased risk of devdoping brain bjmours. Although these bJmours are benon. the po$Fbon in they can cause major problems. The most commc $5te is on the hearing and balance neNes caung problems with deafr$ and coordination. The sense of isolation from deafness onset in aduthood can be immense. People with NF2 may also develop spinal cord tumours. their own SJnICant MPlICatIons. Neurofibromatosis is an unwedictable and vafiable 9tiC e0Th10n IfAt can afferA all pee regardless of gerer. race or age. During their lrfetime, pab.ents may see a vAde rarye of health and sctial care WofesSnal$. both in ¢ommuTrrty and hospitsl setbngs. The Specialist Advisors acl as a point of refwence for familie5 helping them navigate through routine planned events and at times of (xtgs. Essentialty, their rde is to help peopk to learn to live with their diagnosi$ ofneurofibromatosis ayj to eqimp It1 1th the jge (rfwhw). twe, and how to seek help, rf necessary. As a MU1-SYSteM ojndiiion. NF has an impact on many ¥eas of peo*s INes, Th)t just health. The Specialist Advisofs tske a lead role in liaison and advocacy with heath. e(knation. and social serveS to support the qualty and contnuty of Ca lor families afferte¢J by NF. They seek to develop a Servi that Ès professional, tmely responsive to need. Thr setting may be ¢hThcal, wsrting families at home or telephone contact. The quality of the relattonships they establish is cr¢81 to Iheir effeCte$S and may fA)n1Th over many years.
The Neurofibromatosls Association Report and financial ststements Year ended 31 October 2021 Financial Rèview Income Gengrating Activtlios During the period the charrty had Inco resources of £397,174 and a totsl eXpKI1tUre of £390,589 ults"ng in net resources of £6.584. Our head office team have continued lo devek)p inThjVatp vKlual fuNlraising ideas. Our membership and supporters have once again worked hard this year generatiro new and fantath fundrydising events, and are extremely grntelul for all their conts.nued support. This has wovided the charty wth new and diverse funding streams thal can holty be hamessaj for years to Investmont Policy The charrty's frjnds have been invested in short-temi deposiis this finaTKaal year. We ojntinue to review this position as we are aware ofthe need to ensu all irKome pJtenbal is maximised minimum risk. We have given carefvl considerthn as to (xn Make wr reserves generate an income forthe charity and have considered a nJmber of options and infomial a(fvice. At pre5enL given the current re of retum, the costs involved in investing, and the inrent risk. have conts.nued to elect to hokl the reseryes in a mixture of fixed term deposits vrith our bankers. However. we 11 continue lo montkf all other options available. Res•Nes Policy Reserves are needed to bridge the gap ben the spending and weivÈng of i[rne and to cover unplanned emergency expenditure. The trL[sts consider £500,000 is the ideal Ve1 of reserves. and bwng sufficient unrestricted reserves lo fvnd the Speualist Advisor nets¥ork for a minimffti of Iwelve months due to the number of multi year contractual commitments. and the charty's admtiiislTalÈve opernb.ng costs for at least six rrK)nlhs. The trustees consider that adequate resour continue to be a¥ailable to fund the *¥ibes of the Charity for the foreseeable future. The trustees are ofthe wi that the ¢hanty is a goiThJ COrern. Key Exponditurg Areas The key areas of expenditure continue to be the operattonal costs ol the Specialist Advisor netwod(. Each year, we aim to raise sufficaent fijnds to maintsin the twfve mnths. Teserve5. If the charity promdes futher funding for Ihe Specialist Advisor this exdIture. and the reseNes. is W(ety to rSe. Public Benefit All our charitable a¢tvibe8 f$ on imFffowng the bves oflM)se affethd by NeUrfdxCS{S and are undertak to fijrther our thanlabie purw)ses for putrlic bfft. The Trustees have regard to the Charty Commission's guidance on the need for charities to detsver a publ befft and have compld Imlh duty in section 17(21 of the chare$ Act 2011. Recruitmenl Appointment & Induction of Board of TnteeS Under the rewmrements ofthe MerrKYarKlum aThJ ArtKles OfAslatt0n. the cmtrthtrd h)ngest stsndlng members of the Board of Trustees shall retire or pul themsehes fonward for re-e atthe next Annual General Meeting The maximum time a trustee can rerrrain post is rune years. alttwugh Ihat may be extended for a short period by the Board on an exceptional basis.
The Neurofibromatosls Associath)n Report and financial statements Y•ar •nd•d 31 October 2021 The Board of Trustees seeks lo recruit a dIVee rtwx of business. medKal aTrJ patienl expertise, there is no requirefflent for a Board member to have any or iJ1[eC1 exper1W of NF. Our new Trustees are also required to Undergo DBS ched(s. All Tntstees. Up[ eleLion. meet wtth CtAFr to disutss and agree speofic requirements (rf the role. The Trustees. are &so the of Ihe NeuroffiiYomJsis ASSOCI for the purpose of company law, are responsible for prepariThJ the Trustees RepL¥t and the financ4al Statem in accordance applicable law and United lfjngdom Accounting Standards (United lQrvJdom Generalty Accepted Aceounb"ng Pract.). Company Law reqre$ the Trustees to prepare finarKial SImts for each finanrial year whtch give a true and fair view of the state of affaiT5 of the Charty and of the inccffnirJ Tesowcts appl of resources, luding the income and experKliture. of the chaniabje Company tsihat wicKI. In preparing these financial statements. Trustees ate required to.. select suitabk accounting poliues and then ap them nSIStenty", observe the methS and Fthciples in the Chwilies SORP,. disctosed and explained in the financial Strtnts. aTh prepare financial statements the going Cor lesS rt 15 irHppprth to presume that the Charity wdl eonnue li Opat. The Board of Trustees is responsible mataIning proFW accwnb"fwJ ¢(d$ Mthich disclose vrith reasonab accuracy at any time that the financial statements Aith the CompanEs Act 2006. The Board ofTrustees is also spOnSIble for safeguarding the assets of the charitable compry and herKe for takirg reasonatle steps for nbern of the Board of Tr1988 MembeTS of the B¢)ard of Trustees, are dwectofs tslhe PUrF of company L*v. trustees for the purpose of charty law, who seNed during the y&ir and up to the date of this reFrt are set out on page l. Small company prtsvisio This rep(wl hos been wepared In lyd8 ¥fith the provts¥M for small c(Knw)ies under Part 15 of the compan 20LX. Approved by the Board ofTrustees on 07 Math 2022 swJned on ils behalf by". Mi¢h•el Fry Chalr of the Boawd otTn
The Neurofibromatosis Associalion Report and financial statements Year ended 31 October 2021 I report on the accounts of the compary forthe yw endwj 31st O¢aoLw 2021, ¥thich are set oth ¢)n pages 8 to 17. The trustees Iwtho are also the dwectors ofthe u)mpany for the wrposes of company lawl are responsible for the preparation of the accounts. The trustees consider that an audit is Th)t requi for this year under Part 16 of The Companies Act 2006, section 144121 of Ihe Charibes Act 2011 (the 2011 Act) or under Regulat 1011)(al to Ic) of the CharItS Accounts {ScoUand) Re9ulatws 2006 fThe 20(6 Regulabons") and thal an independent examination is needed. The charity's gross income exceeded £250.000 l am qualtfied to undertake the examination by being a qualthed member ofthe A$slon Chartered CertIfd AC{xAK it L8 my reS[hsibl to: examine the accounts under se¢lvJn 145 of the Charlies Act 2011 and under setaion 4411)(cl of tho Charibes and Trustee Investnl {Scotland) Act 21x15 (the 2005 . to follow the ptocedures laid dovK] in the general DtrectM)ns given by the Charity Commission under section 14515llb} of the 2011 Act., aTrJ Basss of independent examlnef8 rgport My examination was caNied Lmrt in acc(xdm Ihe general DI[b"On5 given by the Charity CommBsion and rs in accordan vAth ReguEab"ons I l of the Charities Account5 (Seot5and) Regulation$ 2006. An examination int$ a revie of the accounb.ng record5 kept by the dwity and a comparison ofthe acccmthts presented with those records. It also includes consideraknn of any urmtsual Items or dBc)sures in the accourts and seeking explanabons from you as trustees concerning any SLKh matters. The procedures undertaken do not provide all the evidence that would be required in an audit and conseqLEentsy rKJ opinion is gNen as to whets accounts present a Yrue and fair and the report ts limited to those Tnatte set wt in the statement belox. In connection wilh my examination. no matter has come to my attention" {11 gives me reasonable cavse to believe that in aF)y material SPect the reqU4rerrnts. to keep accouniTrJ recLYd8 In wilh sedi)n 386 ofthe Companies Act 2006 and section 44111{al of the 2005 Act., arKI to prepare accounts wknich accord ¥th the acccrtmting recorts. Ixmpty wth the accounling requirements der Sethon 396 ofthe Companies kt 20[, seLbon 44(1)(b) ofthe 2005 kt and RegtIOn 8 ofthe 2( Accounts Regutati¢)ns whic a consistent with the methots and of the Statement of Recommended practi.. Accounting and Rewrtsng by charit (SORP FRS102) have not been met", or (21 to which, m my 0"nIOn, attenlK)n shoLld b2 dr*MI in Nder to enable a proper erStal ofthe accwnts to be reached. Phili Lano FCCA Fellow of the Association of Chart¢r•d Certified At1n1ants For and on behalf of David HovArd Charterod Acwunlants 1 Park Road Hampton Wick KlngstoD Upon Thames Surr•y KT1 1AS
The Neurofibromatosis Association Report and financial statements Year ended 31 Octobw 2021 Statement of Financial Aclivities (including Income & Expandire Accounts) for tha Year ended 31 October 2021 Total 2021 2021 2021 2020 Incoming Resources from Gen0r Funds Donalions & Legaues Income from Charitable Aclivities Investment Income 184.059 124.000 308.059 201.&34 89,059 I22,9 573 Incomlrwj Rgsourcos from Glwilab Acttvities 2715 124596 397.174 325.236 Other Incoming R•sowc•g Total In 272.$77 124596 397.174 325.236 Expendlturn Cost of ratsing fijnds Expenditure on tharilable aclivrties 109.359 163.146 132.503 295.649 221.365 Tolal R050urcos Exp•nded 258.086 131503 390.589 330.n4 Net (ExpeNtitiTh) 17.907) (S.4881 Roconclllation of funds Total fvnds brought foward Net movement in fijnds forthe year 456,71 87, 544,562 550.050 14.491 (7.907) 6.584 15,488) Total funds carrled fonm 471.197 n949 551.146 562 The stateffErt offinancial acbvil*s IludeS al tosses in the ye¥. All itKoming rpsources aThJ resources expended derive from conlinuing rm)nS.
The Neurofibromatosis Association Report and financial statements Year ended 31 October 2021 Balance sheet as at 31 October 2021 2020 Tangible fixed assets 10 1283 479 Current ass8ls Debtors Cash at bank aThJ in haThJ 11 1,769 685,944 687.713 15,029 605.031 620,059 Credrtor5 .' amounts tsllirvj due within one year 12 137,850 75.977 Net current assets S44.082 Net assets 551146 562 funds Unrestricted funds Restricted funds Total funds 13 13 471.197 79.949 4,706 87,856 The charitable company ts enbtied to exernptson from audit UTthr Seclion 477 ofthe Companies Ad2006 for the year ended 31 October 2021 relating to small eowdes. The trustees have not UIred Ihe carrtable to obtsin an a111 of ts fnanc481 stateffts ts Ihe year ended 31 Octhber 2021 in OrdanCe wrth Section 476 of the CompteS Act 20. resp&X to accounting records ar the preparaticfft ofaw)unls. Companies Act 20(6 relating to sman Ch¥Itsb conymes aKJ ilh the ReporthJ Starth ff sMalr Enlities {effeclive January 20191. Approved ty the Board of Trustees 07 Marth 2022 *J Sd its l1[ ty.. Ml¢hael Fry Chair of Thg Board of Truslg8s Rlchard Goo e Chair & Company Seu•tary Company Registration No. 03798407 Charity Registration No. 1078790 Scottish Charity Register No. SC045051 10
The Neurofibromatosis Assoclation Report and financial statements Notss to the financial statements for the year ended 31 October 2021 Accounting poli¢les The pri1paI accounting policies are summarised bdlyw. have been appl consistentty throughout the year arKI the wecediivj year. Basis of accounting The financial $tateftts with the Chitie5 2011, the Cow¥)anies Act 20C6. Trustee Investsnent (Scotlandl Act 2CI)5. the charrfies A¢nts {ScoVandl Regulations 2006 {as amended). the Memorandum and ArtleS ofAsso¢iabon. and Ihe Charities StateEnt of Recommended Practice fcharities SORPI lapplicabte to clwilies preparing their accounts in accordance vrilh the Financial Reporting Standard appIlL¥b in the UK and RebI of I19nd.. FRS 1021 effecbve from 1 January 2019. The Neurofibromatosis Assc¢im meels the deffftition of a wblic benefft entity Lsnder FRS 102. The Charity has taken advanlage of the FY0VlOns in the SORP for ¢harits apptyw FRS 102 Update Bulletin 1 rK>t to wepare a Statemert of Cash Fk7WS. The financial statements are wepared in er1ry. is the fvn(atonal currenry of the Chaiity. Monetary amounts n these fin81 slaiements are roun to the neest £ The financial statements have been prepared under the historieal cost cOnventn. modffted to indude the revaluatson of freehold properb.es and to include investment wcperties and rtain finanaal instruments at fair value. The winc4pal accwnling policies adopted are set out below. b) Fund a¢untIng Unrestricted fijrhts are for use at Ihe thtyelion ofthe trustees in furt1rae of the gra1 obieclives ofthe Ctsw. and Restricted funds are %iected to restridio$ on their expenditure imposed by the donor. Incoming YvJources All incoming resources are induded Mi slatenEni of fmarK4al aCtsviti tknen the tharity is entitled to tr income. and the amount can be quanlÈfied wtth reaSbEe The foll1g specific poliues are applied to particular igories of srthme: Income frcrfn donations and kgaaes is re¢etved by way of grants, donations, fundraising and gtfts and is included in full in the Ststement of Financkal Athe$ when re1vable. Grants. where entrfement is not Conditi21 on the deltvery of a spe¢ifK performance by the charity, are recognised when the charity tseco urndrtna1ty entitw trj the granL The value of serwces wovided by vrAurrteers has Th)t been inctuded in these accounts, ITKome from charrtable activilies are acctyjnled fcK when eamed, and IoMe wources frC grants. related to pwfom)ance aThJ speafic deliverables, are accounte¢J for as charity eams the right to consideralKin by ils perftyrMan. There has been a change in the afxounting poliry for Lsfetime Subscrtptions from 2010111. Hertceforth Income $OUrceS from lrfets.me subs¢ripl)ns wll be fulty accounted for in the year in which the subsuiption is registered. dl Resourcès expgnded Expendrture is recognised on an &crual basis as a lialxlty is inrred. Expenditure indudes any VAT which cannot be fijly rec4)vered. and is repcwted as part of the expenditure lo which it relates.. Costs of raising fijnds comprise the costs assoriated ryth attta¢ting voluntary income, and also irKlude g0Veman costs. These tndude those costs associ*ed with meetiro the constitutional and statuw requirements of charrty and include the indeperKlent examinerfees and costs linked to the strategic rnaaenI of the charity. Expwditure on Charrtab actNibes e4)mprises those costs incurred by the charity in the delNery of its activities and seMce$ for its beneficiaries. It includes both Costs that can allocated tQ SLKh activities aTrJ those costs of an indirect nabjre necessary to support thwn. 11
The Neurofibromatosis Association Report and financial statements Notes to the financial ststements for the year ended 31 October 2021 All costs are all¢xd eXp1e categories of the Slment L Financial Activities on a basi% dwned to rellect Ihe use ofthe resour. DeprecsabM: Assets are vffitten off over year5 1)n Ihe strawht line basis of deweuion. o) Fix•d Ass•ts Tangible fixed assets are inlialty measured a cost KI $ubsequerthJ wasured at cost or valuation, net of depation and any impaimient b$ses. IndNidual fwed assets costing £250 or more are capilalised at cost Depreuation.. the value of eath asset is 7Mitten off v4ert¥K yws. on a stravJht4ine basis. Golng concern Al the time of approving the finaneial 5talements. the Trustees have a reasonable expectation that the Charty has adequale resour to conknue in opwKJnal exisience for the foreseeab future. Thus the Trustees con"nue to adopt the going o)ncem basis of aCCnting in preparing the finwial statemenis. Incoming Resourc8s from Gonerated Funds Totsl nd5 2021 Totsl funds 2020 2021 2021 al tlonatloTr¥ & Logacies Donations and gifts Events GFf( Aid Grants (note 31 Legacies SUbSptJns 32,937 32,937 57,982 10,849 140,767 59.727 5,797 28.807 39.828 13.377 69.700 43.888 6.095 10.849 17.(%7 59.427 5.797 123.700 300 184.059 124,000 308.059 201,694 b} In¢omg from Charilabl• Athitios Fundraising Goods for Sale 83,718 4.745 84,314 4,745 116,941 6,028 88.463 89,059 122,969 cllnvestmgnt Income Interest 573 2n,5TT 124.596 397.174 325.236 12
The Neurofibromatosis AssocFation Report and financial statements Notes to the financlal statements for the year ended 31 October 2021 3. Grants Total nds 2021 Total lund$ 2020 2021 2021 The Peter Sowefby Foundation The Peacttk Trust The Childwick Charite Trust The Three Oaks Tnjst The Nornian Fanwty chartab Trust The Baron Daptsrt Chartty Thè Schon Charitable Tnjst The Sir James Rolls Charitable Trust The Eveson Charitable Trusl The Hilary Awdry Charitable Trust The James Tudor Foundatir The Sobell Fo¥Jndation The Astrazeneca PLC The Hospital Saturday Fund The AL8n Bosw¢ll Group Charitatle Trust The Roger & Jean Jefcoate TTUSt The Dixie Rose Findlay Charriable Trust The Ajdwick Charitable Trust The Pears Foundkn"on The Joseph Hopkins Charitsbte F¢)undalioTr The Gaia Foundalion The Hadrian Tnjst The PF Edwards Char[tae Trust The Coral Samuel Charilable Trust AW & CS FenwL Charilable Tntst The FetUary Foundati The John Avins TFUSt The Sir je$ Thorn Charitabb Trust The Roger & Douglas Tumw Trust The Thomas J Horr¢ memlat Tn The BCH 1971 charItsb Trust Genetic [SOrderS UK The Sheffield Town Trust The Morrisons Foundat The Anson Charitsbie Tntst 15.0 15,000 5.000 15,000 10.000 500 1.000 1,650 5.000 1S.000 10.000 10.000 750 700 1,200 1.650 1,000 4.)0 1.000 4.000 1,000 4.000 500 s,000 10.000 10.000 30.0) 10.000 30.000 2.000 10.000 10.000 2.000 10.000 2.000 200 10.000 2.000 200 10.000 1.000 4.000 400 1.000 3,1]00 1.000 1,000 2,000 3.000 2.000 3.000 150 3,1KlO 3.000 1,000 1,000 2.000 1,000 1.000 5.IXIO 5,000 1,000 3,417 3,417 2,000 1,000 3,000 69.700 123.700 13
The Neurofibromatosis Association Report and financial statements Notes to tho financial statements for the year ended 31 October 2021 4. Resources Expended NSA arxl Total 1.620 Evetts Fyndrdir 24J92 2132T 46,719 112.c6 132.128 112.ot NSA Research 132.128 24 a327 t12 132 128 Staff cts5b 3M17 22 5.028 41,380 1r 1257 2.312 17.650 2.138 .285 Prwni%5 1287 2.3n 153 312 2.144 175 1.162 521 4.940 9.107 .849 148 855 140 *1 Slaff Cost IL 6tc 14
The NeurofibromatosSs Assoclation Report and financial statements Notes to the financial statements for the year end8d 31 OCtor 2021 5. Net Incoming Resources for the Year This is stated after charges.. 2021 2020 Depreciation Independent Audit Fee 2312 1620 1560 3932 2504 Staff costs and numbor8 2021 2020 Salaries and wages Social security costs Pension costs 184.914 11.117 3,691 199.723 169.321 3,416 182.082 No employees reNed emoluments of more tha) £50,0(Kl. The Associats wrdtes a pension scheme for its employees as cwrenty required. Costs have iTKmsed due to stsff and payment fDr Lead Specialist Advisor services throughout the pandem Per1. The average numter of employees dwiThJ y. uld (x) the bS offuiktime &4uivalents. wa5 as follows: 2021 2020 CEO Membership Seuetary ITllnfomation Fundraing Administrakn"on and 8UPF¥Yt Charsge manager Devdowient manage Trustee remuneAtion No members ofthe Board ofTrustees rece¢ved any remuneration dumg the year. th no travel costs VR reimbursed during the year (last year. £192.69 was reintswrsed to one member of the Board of Twstees). Rglated party transactions There were no Related Paty Transacli(Th Ihe yw. No Tn. or dher pws¢Yt ld to ts Association. had any personal interest in any transaction. 15
The Neurofibromatosis Association Report and financial ststements Notes to the financial ststements for the year ended 31 October 2021 As a chartty. The Neurofibromatosis Asscoatjon ts exempt fr(fft tsx on Int arKI gains falling withtii section 505 of the Taxes Act 1988 or s256 ofthe Taxation of Cheable Gains Act 1992 to the exlent th* these are appled to its charitable objects. No tax charge5 have artsen in the Associati{. 10. Tanglble flxed assets 2021 2020 As at 1 November AddOnS Removal of fvlty deprlated assets As at 31 Octob 5.498 3.115 4,538 8.613 5,498 Accnlated deweciation As at l November Charge for the year Removal of fulty depreciated assets As at 31 October 5,019 2.312 4.075 7.331 5,019 Net book value As at 1 November As at 31 October 479 1.283 463 479 11. Debtor 2021 2020 Debtor Control A( Rent Deposit Other debtors Prepayments {89) 76 1,858 14,953 15.029 12. CreditOf5: amounts falling due TAilhin one year Trade Creditors Taxation Lottery Gfant Other Creditors Accnwls and deferred ino)me 42.946 20,434 4.474 10,000 2,658 38,412 10.0 84,905 137.850 16
The Neurofibromatosis Association Report and financial statements Notes to the financial statements for the year ended 31 Octobor 2021 13. Analys1$ of net asgets bet%en funds Total funds Tangible fixed assets Current assets Current habilities 1.283 607.764 137.850 471.197 1,283 687,713 137.850 551.146 79,949 79.949 Movement in funds At1 At31 Octobèr 2021 Restrlcted Funds Support Groups ReSearChSA'S WebsitelPlafft)rm cwr Camps NF2 Acb"wties 3.744 67.256 3.744 59,349 124,5 132.503 16,851 87,856 16.851 79.949 124.596 132.503 Unrestricted Funds .7 272.577 258.086 471.197 Totsl Funds 541562 397.174 390.589 551,146 Purposes of Restrithd Funds Support Groups: Resear¢hlNSA's" cwr Camps.. NF2 activiiies." This g¢ is for the of SUppt gmw>s in warifJJs paits of the county Donations made to be spent on Researth SlIst Advisor Netwk. Donations restricted lo spend on camps for chIldn Donations made speafully forlhe Tunning ofthe NF2 eath year 15. FlTrancial tommitments At 31 October 2021, the charity had annud commitsnwts uThJer rCanCellaNe ¢¥wating leases. following rent renegottionS. as folk)ws: 2021 Expiry dato: Not later than one year Laterthan one year and Tr)t l than five y&s 5,833 17