The Neurofibromatosis Association Report of the Board of Trustees Year ended 31 October 2020 Charity Registration Number 1078790 Scottish Charity Registration Number SC045051 Company Registration Number 3798407 Yu
The Neurofibromatosis Association Report and financial statements Year ended 31 October 2020 Reference and admlntslralive inforniation Charity NarrE". Chanty Registration Number. 107875 Scotbsh Charity Registrabon Number. SC045051 Company Registration Number. 3798407 Charty Working NarTE: NeNe Tuul5 UK Regtstered office army operatM)nal address.. 44 Cmte Lane West Wmbiedon Lond SW20 OLA Telephone.. Fax.. E.mail a(klress.' Website add$.. 020 8439 1234 020 8439 1200 nerVeturrS.org.uk .erVeWurs.(Xy.uk NeNe Tumourn UK {Nerve Tumours UK is the working of The Neurofibromatosis Assocr"ation. Pr*)r to 01 November 2018, the working name was The Neuro Foundation.) Board of Trustees The Cunt Board of Trustees is." Michael Fry (Chairl Dr. Timothy Com Emily Owen Stewart Lee Richard Gce Ivre Chairl Professor Rosalie Femer Jonathan Bru Rohan Chanmugam Senior Management P8raonnel The trustees delegate day-to-day manaJement ofthe charity to: Karen CockbLtm, Charity Director Patrons Gillian Anderson Independent Examingr5 David Howard Chartered Accountants 1 Park Road Hampton Wck Kingston- upJn- Thames Surrey KT14AS Banktt8 National $trrinsteF Bank P 5 Mar1(et Place ngston . uwn. Tharr Surrey KT11WA VÉ
The Neurofibromatosis Association Report and financial statements Year ended 31 October 2020 Board of Trustees Report for the Year Ended 31 Octobor 2020 Objectives and Activities The charity's vision is To improve the INes of ttKJse affected by neurofibrorrAtosis°. 'NeNe TuffK)urs UIC is a working name for the charity. Wh tsinS tts legal na"The Neurofibromatosis Association.. To allow the charity to delwer its vision of helping to improve the lives ofthose affected by Neurofibromatosis (NF}, it works in OlabOration with the Highty Specialised CommissFoning Servi. formerty the National Commissioning Group INCG) funded service. The mission for the charity is to 'Enable peop concerned about Neurofibromatosis to find solutions appropriate to them by increasing awarenes5, and by provtding support and information on Neurofibromatosis.. The charity delNers its mission through fve swvices to fftmbers. SUP[er8 and benthiaries. It endeavours to.. Infomi We provKle accurate, relevant and up to date information that explains the condrtions of NF1 and NF2, the implh2tions. challenges and OPFQrtunibes. in language understood ty Adv1$8 We provKJe practM>l and errL)ticaF advi* to help people find the best services and support available. We enable peoF4e to make chotis at(iut h¢Y4V they approach and live th neurofibromatosts. Advo¢ats We aim to increase knowledge, awareness and understsnding of NF, and will campaign for change in areas we believe will improve the lives of those affected by neurofibromatosis. We tske a PNOtal role in bringing together groups of people Intested in neurofibromatosis to maximise the support and information availabte to them. Connect Fund We make fijnds availab for s11 projects to b)dtes and patient groups where we believe r( will make a difference. The ¢harity works with the following groups to xhieve its missb)n: Patients and carers Families with neurofibromatosi$ The medical eommunty NF Specialist Netsvork of Nurses and Advisors The research community IpaFtieularty The Nerve TuffLiurs UK Medtsj Advisory Board) Supporters Volunteers other charities Achievements and Perforniance Although hindered by the Covid-19 pandemic for the tatter 9 months of the financial year, the charity has continued to concentrate on its fitraI five seNices again this year. The pandemic did not detract from working to strengthen and develop our core support strucbjres to ensure that we continue to provide the best Frf)ssible support and infomialion to anyone affected by NF. However, during this period. our SerVS were under increased demand. and so we reorganised to provide extra helpline houts. Other servitss were provided virtualty or by telephone consultats'on. ¥E UK
The Neurofibromatosis Association Report and financial statements Year ended 31 October 2020 Impact of Covld-19 on Charity Servlces & Finances We fund a unique and vital service, whh is not provided by other organisatrons. Our services were particularly important for people diagnosed wrth NF and thLyf carers. Many people with NF are vulnerable and often isolated. They have been immensety distressed by the ¢urrent situation, as some of their complicats.ons may make them rn0 susceptible to tchIng Covid-19. Many have had to shield. The effect on the broader group of people with NF has been that the work of many genetu and neurology clinics has been significantly reduced as staff have been redeployed to critical and Covid-19 servKes. In response, we extended our helpline availabilty and rolled out virtual services to ensure that we can continue to reach and SUPFM)rt our benefiry"aries. We are acutety aware of the potential impa¢t on mental heath both for our benefiarleS and our stsff. We do not receive statutory or Iccal fvnding, and the bulk ofthe chanty's income has been from tharitable gwing and monies raised from events. Neaty all events were either postponed or cancelled this year, which ha$ had a significant adverse effect on our income Strea. We were able to access some emergency fvnding to alleviate a small percentage {10°1ol of lost income but have not benefitted from any signikant fvnding. This is because most emergency funding ha$ been targeted at small kjeal charities. W8 continue to fvndraise as as possible wilh new nnovative and ViThJal scheffes. Our decision was not to furlough our staff as we needed all staff member5 to resoufce to maintain services and to conb.nue fundraising initiatives remotety. Our assessment is that our strategy has been approwiate and has minimised our deficit this year. Regrettably. the uncertainty caused by the pandemi¢ has forced us to delay or rethink our development plans. For example, agreements to fill vacancies in four exisb.ng regions. were delayed for six months. This has meant that some pats.ents and families, wtho had prwously benefftted from our communty-based support were not ab to access the same level of support. The effect of this lower level of available support was compounded by the issu&s conceming NF and CoV-19. The charty focussed on managing every Ttem of expendrture, where feasible and this has signfftantly reduced our expenditure. For example, deSn & production of lrterature has been brought back in house, and office rent has been reduced by 30% per annum. As we fvnd a fieOrt of Specialist NF Nurses knisors {Speaalist Advisors). our polry requires us to rrraintain 12 months of reserves. Although the charrty reacted very qUkty to the curftnt situatK)n, and we consider that we minimised the impact on our 0ratIonS, we were, nevertheless required to draw down from reserves. As the pandemic continues, we may require fvjrther draw down in the rTh)nths to co. However, at this time. we are confbjent that we will continue to maintain our reserve$ Plans for Future Sustainability The pandemic has forced us to reconsider our strategic plan, which h*1 been ck>se to adoption. The Board has implemented a strategy group to look at how we can continue to provKle our swvices, in a post Covhl worfd. We expect to publish our strategic plan in ajvance ofthe 2021 AGM. Our focus is on how we can streamline our serv1$, etrordinate our work with pathers and improve the education of the medi1 profession. Our aim is to ensure that people are able to asS advice and support as effectively and efficiently as possible, not onty from the chaTty. The charity has adopted new ways ofworking, including virtual ¢linics. Although online services are not prath.cal for all {for example. pats.ents WFth cogntbve impainnent and leaming issues), we anticipate that improved online connectivty and familianty may bad lo reduced delivery costs and greater efficiency. Post pandemic. we exFeet that a balance of online and in peTson delNery wll allow the harity to provide services to more people. Specialist Advisors The Charity will continue to maintain its Specplist Advisors and will seek to idenbfy areas of the county where we can work with the NHS to make joint appointments. The charity currenty fijnds a Tthork of nine slist Advisors across the county. supporting posts in Newcasue (21, Bimingham12}, Ptymouth, Liverpool, StyJthampton. Sheffield and Wales. Two Spe¢ralist Advisors provide the Nerve Tumours UK national helpline on a part time bass. whi¢h provides a¢fvice and connects people affected by UK
The Neurofibromatosis Association Report and financial statements Year ended 31 October 2020 NF with relevant practical hdp. ther in their communty, or in clin. There currentty a vacanry based in Leeds, covering the West Yorkshire & HLFmbersKte regh)n, and we expect this FM)St to be filled shortty. Each posl supports befvdeen 500- 3.560 patients per year working via clinTh. ho visits. schools. advisory services and telephone consultab'on. The role of Specialist Advisors is very drrferse. We have had excellent feedback from the families supported by our Specialist Advisors. It is plain to see that for those familEs, the support they receNe from the charity and our Specialist Advisors is pivotsl in helping them to cope wrth NF. anticipate th* SUPFM)rting the Spe¢ialist Advisors netsyork will continue to be a key role for Nerve TunK)urs UK Over 60% of patients with NF1 will have leaming drfficulties. However, public awareness of NF is low. Our erIence is that this can lead to some people wtth NF struggling at school, with inappropriate, or nonexistent support. Nerve Tumours UK offers a schcols, advisory serv, iNFomi, staffed by our Specialist Advisors. Vvhere engaged, the team worts dosety with teachers. supporting tailored leaming plans, and suggesting mechanisms for enhancing the child'5 experience al school. Even during the pande& we have found that we Can still operate iNFom effectivety. alber( virtualty. Nerve Tumours UK continues to offer an extensNe range of Itterature and information, for lay people and professionals. Our literature is widety used by n11 teams across the county. Our leafiets and pamphlets are subject to constsnt review and update. Medical professH)nals a also invited to use the Nerve Tumours UK national helpline. As a result of the Pandern, the Nerye Tumours UK H&•J Office ream has worked exceptionally hard this period. Key workstreams have induded the devebpment of our websrte, in paiticular sections on g)vemment Covid-19 advi, mental health and Search. We have seen a surge in activity on our website. and this has greatly increased our interactions and the support available lo the community. Facebook coverage arKf eng4ement has continued to grow. Over 64.500 people are reached organicalty each nth and our page views are up by 295%. Our website achieves an average of 38,000 users per nnth, with 63,562 in December 2020 alone. Nerve TrUrS UKS Ttter reach Continues to grow steadily with 1.352 followers. Our byeets make an average of 80.333 iMpressS nb)nth. Our Instagram reach is also increasing, we now have 1,695 followers. The number of subscribers to the NeNe TurrKiurs UK newsletter has increased to 2,592. more than double last yearfs count. We continue our membership ofa number of other social and marketing branches eg. Meetup groups, to direcdy target our challenge events oulside the communty, and at 166 members, we are reaching a wider audien than before. On Worfd NF Awareness Day in May 2020, desFMte l¢xkdown, total sctial media posts on the reswtive NF1 and NF2 Days led to the highest peak of a¢tivths across socid medra arKI the web during the year. We also continue to seek to develop and strengthen our instrtutional partnefships with organ¢sations such as The Small Charities Coalition, Embracing Complexty. Genetic A1[kqn. Genetic tAsorders UK etc.. and have started planning for wferences, events and outreach in 2021. There are no immediate financial cOnM$, although the length of lockdown and tt)e continuing pandemic may cause some concern, Nerve Tumours UK is still ¢u¥renUy on track to meet its long-term financial targets. The continued rollout of core services throughout the period is an excellent reflection of the combined efforts and dedication of the Specialist Advtsors, our rnembers. supporters. head Offi staff and Medi1 Advisory Board during this unprecedented time. The Trustees are very gratefvl for the exceptionally hard work which has been put into the Charity.
The Neurofibromatosis Association Report and financial statements Year ended 31 October 2020 Structure, Governanco and Management NeNe Tumours UK is a charitab ComFony. limibj by guarantee. incorporated on 30 June 1999 and registered as a char5ty on 5th January 2000 (previously 284653 register&1 19821 with a membership base. The company was established under a Memrandum of Asswation, whh established the objects and FK)wers ofthe charitable company and is govemed under its Artth of Association. In the event of the company being wound up members are required by the adopted ConstitUtn to C•)ntribute an anKJUnt not exceeding £1. The directors of the company are also ¢harity trustees for the purposes of charity law, and under the company's Articles are known as members of the 8oard of Trustees. The Board ofTrustees meets at least four times a year and is responsible for the strategic direction and poly of the charity. Medical input is gwen via our Medical Advisory Board. a representative of which siL8 on the Board of TTUStees. Medical Background The charity's membership is mosty drawn from frdmilies affected by NF. There are two types of NF. NF1 affects 1 in every 2,500 people wortdwide, whth means that there are more than 25.000 in the UK" NF2 much rarer. with 1 in 35,000 affected worldwide {1,000 in the UK}. An affected person of either sex has a 1 in 2150.501 chance of passing the altered labnomiall gene on to their children. However. everyone has a risk of having an affected ¢hild because 500k of all those affected by NF are the fitst person in iheir to be $0 affected. NF1 is a hugely variable Condition. whh has the pjtents.al to develop a large number of complications. Some people with NF1 only having skin invotvement, but potential cOmplat[0nS include.. specffic leaming dtfficulties and behavioural problems- which affects about 60% of all people with NF1,. high blood pressu (hypertensionl,. curvature of the spine lscoliosisl." malfo¥rnation of the long bones Ibelthv the knee and bekm the elbow) {pseudarthrosis}' large benun skin tunKsurs Iplexrfom neurofibromas)" tumours on the nerves of sight (optic glioma)., internal, spinal and brain tumour5- which are usualty benign however 1¢>15% of people will develop a malignant tumour related to their NF1. The rst signtficant issues for people with NF1 is that the occurrence of these complications cannot be predicted even within familtes. Many people with NF1 also have low selfesteem and this can cause prOeMS forming friendships. whth leads to isolat. NF2 causes ¢onsislenty more problems than NF1, and tt has an increased risk of developing brain tumour5. Akhough these tumouis are benign, the position in which they grow can cause major problems. The most common site is on the hearing and balance nefves causing prObrrts wrth deafness and coordination. The sense of isolab.on from deafness onset in adulthood can be irrmense. People wth NF2 may also devebp spinal cord tumours, w¢th their own significant complicab"ons. Neurofibromatosis is an unpredictable and variable genetic condition that can affecl all people regardless of gender, race or age. During their lifeb"me, patients may see a wide range of heahh and social care professionals, both in community and hospital settings. The Specialist Advtsors act as a point of reference for families helping them navigate through routs.ne planned events and at times of crisis. Essenb"ally, their role is to help people to learn lo live with their diagnosis of neurofibromatosis and to equip them witti the knovAedge of when. where and how to seek help, rf necessary. As a mulb-system CondOn. NF ha$ an irw on many areas of peoe'S lives. rM)t just heath. The Specialist Advisors take a lead role in liaison and advc¢acy with heath, education and social services to support the quality and contsnuity of care for families affected by NF. They seek to develop a service that is professional. timely and responsive to need. Their setting may be clinical. visrting fatrmlies at home or telephone contact. The quality of the reL4tionships they establish is cribcal to their efftsvenesS and may conb.nue over many years.
The Neurofibrornatosis Association Report and financial ststements Year ended 31 October 2020 Financial Review Income Generating Actlvltles Our head Offi leam, with their innovabve virtual fvndraising ideas, our membership and supporters have once again worked hard this year generating ne4V and fantastic fvndraising events, and we are extremely grateful for all their cor¢linued support. This has provKted the charty wilh new fvndin9 streatTts that hopefvlly be harnessed for years to come. Investment Policy The charity's funds have been invested in short4em deposits this financkgl year. eontinue io review this position as we are aware of the need to ensure all in¢onE potentr.al is maximised with minimum ri8k. We have given careful consideration as to how we can make our reseTves generate an income for the Charity and have considered a number of options and infonnal thi. At presen( gNen the current rate of retum, the costs involved in investing, and the inherent risk. we have elected to hokl the reserves in a mixture of fixed temi deposits with our bankers. However, we will ¢onlinue to ftnit0r all other options available. Reserves Pollcy It is Nerve Tumours UK wlicy to hold sUffiCnt unrestricted reserves to fund the Swalist Advisor neOrk for 8 period of at least twelve months, and the chty's administrative and oFerating costs for at st Stx mnth5. K¢y Expendlture Areas The key areas of expenditure continue to be the operational costs of the Specialist Advisor netsy0. Each year, we aim to raise sufficient fttnds to maintain the tsvefve mnths, reserves. If the charity provides further funding for the Specialist Advisor netsyork. this expenditure, and the requi reserves is likety to increase. Publ1¢ Benefft All our charitable a¢tivities focu$ on IrOving the INes of those affected by Neurofibrom8to$ts and a undertaken to further Our charitsble purposes for publi¢ benefit The Trustees have regard to the Charity Commission's guidance on the need for chart$ to deliver a public benefft and have complied with the duty in seetFon 17(21 of the Charities Act 2011. Recrultmenl Appointment & Induction of Board of Trustees Under the requirements of the Memorandum and Aslides ofAssoa"ats'on, the one-third longest standing members of the Board of Trustees shall or put themselves forward for re-election at the next Annual General Meetin9. The maximum time a trustee can remain in post is nine years. allhoh that may extended for a short period by the Board on an exceptional basis. The Board of Trustees seeks to recruit a dNerse mix of business. medical and patient experty"se, there is no requirement for a Board member to have any direct or indirect experience of NF. Our new Trustees are also reqUId to undergo DBS checks. Al Trustees. upon tion. rt wllh the Chair to discuss and agree specffic requirements of the role. Rosponslbilltles of the Board of Trustees Company law requires the Board of Trustees to prepare finanual staterrEnts for each financial year, which give a true and fair vW of the slate of the affairs of the charitable company as at the balan sheet date, and of its
The Neurofibromatosis Association Report and financial statements Year ended 31 October 2020 incoming resour¢es and application of resources. induding income and expenditure, for the financial year. In preparing those financial statements, the Board of Trustes has foll¢)wed best practice and.. Selected sultable accounting policies and then applied them consistenty,. Made judgments and estimates that are reasonable and prudent Prepared the financial statements on the going ¢oncem basis unless it vrds inappropriate to assume that the company will continue on that basis- and Are responsible for the IntenanCe and integrity of the corpjrate and finanaal inf0mtIOn included on the company's website. The Board of Twstees is responsible for maintaining proper aco)unts"ng records which discbse with reasonable 8¢curacy at any time that the financial statements compty with the Companies Act 20C6. The Board of Trustees is also responsible for safeguarding the assets of the charttable company and hence for taking reasonab steps for the prevention and detection of fraud and other irregularib"es. Members of the Board of Trustees Members ofthe Board of Trustees. who a directors for the purpose ofcompany law, and trustees for the purpose of charty law, who served dLEring the year and up to the date of thk8 reporL are set o(rt on page 1. Independent Ex4miner8 The charity's trustees consKler that an audit 6 not requir&l for this year and that an inendent exarrunation is needed. Accordingly, Davtd Howard Chartej A(tountants. a fim ofaccountartts sla1¥j 7 charty nts, have reved the followng financk41 statements. Small company provislon$ This report has been ppared in acc(*dan with the $aTr provisions for small companies under Part 15 of the CompanEs Act 2006. Approved by the Board of Tnjstees w 22 March 2021 and signed on its tehalf by.. Mlchael Fry Chalr of Thè Board of Trustee8 RSchard Goode Tnts0 & Company Secretsry
The Neurofibromatosis Assoclation Report and financial statements Year ended 31 October 2020 Independont Examln0f8 report to the tnmtees of The Neurofibromth18 Assoclatlon (Neré• Tumours UK) I report on the accounts of the comparry for the year ended 3111 October 2020, whKh are set out on pages 8 to 17. Rospectlvt responsibilbties <rf trust$ and 0Miner The trustees (who are aSso the directors of the company for the purwses of company law) are responsible for the preparation of the accounts in acrdanCe with the temis ofthe Char¢knes and Twstee Investment {Scottandl Act 25 and the Charities Accounts (Scotlandl ReguLations 20C6 {as amended}. The trustees consider that an audit is not required for this year under Part 16 of The Companies Act 2006. section 144121 of the Charities Act 2011 Ilhe 2011 Act) or under Regulation 1011}la} to Icl of the Charities Accounts IScotland} Regulatsons 2006 ('The 2006 Regulations'l and that an independent examination is needed. The chanty's gross in¢))me exceeded £250,000 and I am qualified to undertake the examination by teing a qualifEd of the Asscciatson on Chartered Certified Accountants and it is my resFM)nsibilty to.. examine the acUnts under section 145 ofthe Charlties Act 2011 and under sectKffl 44(1){c} of the Charities and Tnjstee Invesknent IS¢otland) Act 2005 {the 2005 Acll, to follow the prOdre$ laid down in the general DirecnS gwi by the Charity Commissiw¢ under section 145(5){bl of the 2011 Art. and to state whether particular rrAtters have come to my 8ttenth)n. Ba818 of Independent examinots report My examination was carried out in accordan with the genefal Directions gNen by the Charity Commwion and is in accordance with Regulations 11 ofthe Chants'es Accounts {ScolJandl Regulati)ns 2006. An examination includes a review of the accounting records kept by the charity and a comparison of the a¢counts presented wrth those records. 11 also includes consideration of any unusual items or disclosures in the accounts and seeking explanations from you as trustees conMing any such matters. The procedures undertaken do not provide all the eviden¢e that would be required in an audit and consequentty no opinK)n is grven as to whether the accounts present a 'true and fair view, and the report is limited to those matters set out in the statement below. Independent examinefs statoment In connection with my examination, no matter has come to my attention." 11) whh gives me reasonable cause to telieve that in any material respert the require". to keep accounting cOrdS in accordan with section 386 of the Companies Act 20[ and section 4411){al of the 2005 Act and Regulation 4 of the 20[ Accounts Regulatr)ns' and to prepare accounts which accord with the acccMJnts"ng records. compty with the accounb'ng requirements of the compan Act 2006. section 44(1)(bl of the 2005 and Regulat 8 of the 2006 A¢¢ounts Regulath)ns which are consistent wth the methcxls arKf prinaples of the Statement of Recommended Practice: Accounting and Reporting by Chatibes have not been mel., 121 lo which, in my opinion. attention shoukj be drawn in ¢Yder to enabte a proper Un[Standing of the accounts to be reached. Philip Lane FCCA Fellow of the Association of Chartered Certlfiod Accountants For and on behalf of David Howanl Chartered Accountsnts 1 Park Road Hampton Wick Kingston Upon Thames Surrey KT1 1AS Date:
The N8urofibromatosis Association Report and financial statements Year ended 31 October 2020 Statement of Financial Activities (Including Income & Expendire A¢counts) for thè Year énded 31 Octobèr 2020 Totsl funds 2020 Totsl funds 2019 fund8 2020 ndy 2020 In¢omlng Resources from Generated Funds Donations & Legacies Income from Chantab Activities Investrnent Income 154.844 46,850 201,694 332,898 116.256 573 6.713 122,9 573 133,396 1,069 Incoming Resources from Charitab Activities 271,6n 325,236 467.362 Other Incoming Rosourcos Total Income 271,673 325,236 467,362 Expenditur• Cost of raising fijnds Expenditure on eharitable a¢b'vities 109.359 109.359 128,208 1E6.347 55.018 221.365 295,322 Total R•sou0$ Exp•nd•d 275,7 55,018 330,724 423,530 Net Income IExwrtditure) 14,033) (1,4SS) ISM88) 43,832 Reconciliation of funds Totsl fvnds brought fotward Net movennt in funds for the year 460.739 89.311 550.050 506,218 (4.033) (1,455) 15,488) 43,832 Total funds carrled forYrd The statement of finanal activrties IrlIdeS all gains and tosses in the year. All incoming resources and resources expended derive from continuing operations. The statement of the financial activits also corylies with the requirements for an income and expenditure account under the CoMpanS Act2006.
The Neurofibromatosis Association Report and financial statements Year ènded 31 October 2020 Balance sheet as at 31 October 2020 2020 2019 Tangible fixed assets 479 Current assets Debtors Cash at bank and in hand 15,029 605,031 620.059 15,078 582,851 597,929 Creditors . amounts tslling due within one year 75,977 48,341 Net current assets $44,082 649,587 Net assets 5K562 Analysis of net assets botwegn fvnds Unrestricted funds Restricted funds Tolal funds 456,706 87,856 460,740 89,311 550.050 The charitable company is entiljed to exemption from audlt under Section 477 of the Cornpanies Acl 2006 for the year ended 31 October 2020 relating to small companies. No memtr of the company ha5 deposited a noti, pursuanl to section 476 of the Companies Act 2(M%, requiring an audr( of these financial statements. The trustees acknowledge their responsiblif( foi ensuring that the chanty keeps accounting records which ¢ompty wrthin section 386 of the Act and for preparing of financial statements which give a true and fair vtrew of the state of the affairs of the company as at the end of the financial year and of rts incoming resources and application of sources, including its income and expendilure for the financial year in accordance with the requirements of sections 394 and 395 and which otherwise compty wrth the requirements of the Companies Act 20¢% relating to financial statements, $0 far as applicable to the rnPany. These financial stents have been preparèj in aC(a)rdan with the F)rovisions appluble to companies subject to the small companies regime. Approved by the Board of Trustees on 22 March 2021 and signed on its behalf by.. Michael Fry Chair of The Board of Truste¢s Rlchard Goode Ttt0 & Company Secretary Company Registration No. 03798407 Charity Registration No. 1078790 Scottish Charity Register No. SC045051 10
The Neuroflbromatosis Association Report and financial ststements Notes to the financial statements for the year ended 31 (ktober 2020 Accountlng policles The principal accounting poltcies are summarised below. Tr accounling policies have been applied consistenly throughout the year and the preceding year. Ba819 of accounting The financial statements have been prepared in accordance with Acwunting and Reporb"ng by Charities". Statement of ReComnded prti applicable lo charities preparing their accounts in accordance with the Financial Repotb"ng Stsndard applicab in The UK and Republic of Ireland (FRS 1021 (effective 01 January 2019) - (Charitses SORP IFRS 102)). the Financial Reporting Standard appltcable in The UK and Republ[¢ of Ireland IFRS 102} and the Companies Acl 2006. The Neurofibromatosis Association meets the definition of a public benefit entity under FRS 102. The principal aC¢Cnting poltcies in the preparats.on of the financial statewts are $et out below. b) Going concern At the ts.me of approving the financial stateMts. the trustees have a reasonable expectation that the charity has adequate resources to cont'fnue in operational existence for the foreseeable future. Thus the tTUStees continue to ayopt the going concern basis of accounting in preparing the financial staternents. Fund accountlng Unrestricted funds are available for use at the discretion of the trustees in furtherance of the general objectives of the Charty, and Restn"ct8J funds are subJ"ected to resthtsons on their expenditure imposed by the donor. dl In¢omlng ruourcey All incoming resources are included in the ststement of financial activities when the charity is entrtled lo the income. and the amount can be quanttfied with reasonable accuracy. The foll¢Thing specific policies are applied to parts¢ular categories of income: Ineome from donations and legac$ is received by way of grants. don"ons, fundraising and gifts and is induded in fvll in the Slatement of Financial Activities when r1vable. Grants, where enlitlement is not condth.onal on the delivery of a specific performance by the charity. are rgnised when the charity becomes unwndf(ionalty entitled to the grant. The value of services provid&1 by Voluntee has not been included in th8se accounts. Income from charitsble activibes are accounted for when eamed, and Income resour from grants. where related to performaftce and spectfic deliverable$, are aOUnted as the charity eams the right to consideration by its pfOrManCe. InconE from charitable activibes aL%o includes income deriv&J from goods sold via the online shop and this ts below the small trading tsx exemption. The has been a change in the ac(x)unting pjlicy for Lrfetime Subscriptions from 2010111. HenfOrth income resource5 from lrfetirre subscriptions will be fulty accounted for in the year in whth the subsmon 15 tstsred. Rosources exnded Expenditure is recognised on an a¢crual basis as a liability is incurr&J. Expenditure includes any VAT which cannot be fulty recovered, and is reported as part of the expenditure to which it relates.. Costs of raising fvnds comprise tt)e costs asscciated with attracts.ng voluntary income, and also include govemance costs. These include those costs associated wFth rneeting th8 conStrt¢naI and stabJtory requIrents of the charity and include the independent examiner fees and costs linked to the strateglc management of the charty. Expenditure on charitable activities comprises those costs incurred by the charty In the delivery of its activities and Servi for its trnefiCIaS. It includes both costs that can be allocated directty to such activities and tho costs of an indirect nature neLessary to SupIrt them.
The Neurofibromatosis Association Report and financial statements Notes to the financial statements for the year ended 31 October 2020 All costs are allocated beeen expendtture categories ofthe Statement of Finanual Activities on a basis desed to reflect the use ofthe source. Depreciaton: Assets are written off over years on the straight line basis ofdepreciation. Fixed Assets Individual fixed assets costing £250 or rre are capitalised at cost Depreciation. the value of each asset is written off over years. on a straight-line basis. g) Online Shop The income from the on-line shop is derived from the sale of Christmas Cards and branded merchandise. Incoming Resources from Generated Funds Unrestrictod Restricted funds funds 2020 2020 Total funds 2020 Total funds 2019 al Donatlons & Legacles Donations and gifts Events Gift Aid Grants Legacies Subscriptions 28,807 39.828 13.377 22.850 43.888 6.095 28,807 39.828 13.377 69,700 43,888 6.095 32,249 111,451 21,681 96,400 65,311 5,806 46,850 154.844 46,850 201.694 332,898 b) Income from Charitsble A¢tivits¢8 Fundraising Goods for Sale 110,228 6.028 6,713 116,941 6,028 124,459 8,937 116,256 6.713 122.969 133,396 ¢)Inveslment Income Interest 573 573 1069 12
The Neurofibromatosis Association Report and financial statements Notss to the financial statements for the year ended 31 October 2020 3. Grants Tolal funds 2020 Total funds 2019 funds 2020 fvnds 2020 The IThCT Foundation The Peacock Trust The Childwick Charitable Trust The Three Oaks Trust The Norman Famity Charitable Trust The Baron Davenport Chaiity The Schon Charitable Trust The Sir James Rolls chitable Tnjst The Eveson Charitable Trust The Hilary Awdry Charitable Trust The James Tudor Foundation The Sobell Foundatton The Hospital Saturday Fund The Alan Boswell Group charitaLe Trust The Roger & Jean Jefcoate Trust The Dixie Rose Findlay Chantsble Trust The Arthvick Charitable Trust The W&M Morris Charitable Trust The Joseph Hopkins Charitable Fwndation The Gaia Foundation The Hey Smile Foundation The PF Charitable Trust The EIG Foundation AW & CS Fenwick Charitable Tn The Lloyds Bank Foundation The John Avins Twst The Sir Jules Thom charitab Tfust The Roger & Douglas Tumer Trust The Thomas J Home Memorial Trust The Sheffield Town Twst The Morrisons Foundatson The Anson Charitable Trust 25,000 5,000 12,000 10,000 1,000 700 950 5,000 10.000 750 71XS 10,000 750 700 1.200 1.200 1,000 4,000 1,000 5,000 10,000 2.000 4,000 4,000 500 5,000 10,000 10,Cw)O 2.CKIO 10.000 2.000 10.000 4.000 500 soo 500 3,000 1,000 2,000 1,000 1.000 3,000 2,000 150 150 500 1,000 750 3,000 1.000 1.000 2.000 1,000 1.000 2.000 5,000 2.000 1,000 3,000 1,000 3.CKJO 46.850 13
The Neuroflbromatosls Association Report and financial statements Notes to the financial statements for the year ended 31 October 2020 4. Resources Expended Gost fynds Vc4untary Irrfoalts) NSA'S aTrJ [thI¥J$ hewi Independent Auditors Fee Independent Auditer5 Fee f¢r other wotks Events 743 743 44.275 44.275 39.415 76,817 ,913 FundraisiThJ Newsr$ and infonTrwi NSA'S Research Tru5te8 and wmittee rrtttry5 17.488 21.927 76.817 96.913 17 488 21927 3upFrtCQSts lOCadto actl¥lUos 5248 2,9XI 5. 17.039 1.912 417 9.185 4.682 38,506 525 4.320 115 943 2.524 20.756 139 1,141 ConsuttanGylProfessK)rsal F8es Depr8(aation Premoes Printing. KX)5tage and $latK)nery IT, t8phOne ark1 fax Olher 670 IA6 1.563 3.217 177 129 71 155 328 675 1.926 S272 108S3 70.019 107 105 428 Staff Cost PremBes C09ts tpreatiOn 1¢ etc Allwtion based on SFent on Allrtatityl based on staff D)sts 5. Net Inc¢xning Resources for the Year This is ststed after charges: 2020 2019 Depreciation Independent Audit Fee 1048 1476 1560 2504 2524 14
The Neurofibromatosls Association Report and financial statements Notes to the financial statements for the year ended 31 October 2020 Slaff costs and numbers 2020 2019 Salaries and wages al security costs Pension Costs 169,321 156,431 8,295 2,519 167 245 3,416 182.082 No employees received emoluments of moTr than £50.(MXI. The A$%ation operates a pensK)n scheme for its employees as currenuy required. Costs increased due to bringing back rtain projecls and seTYS in house, as overall, this meant a significant saving. The average number of employees during year, cakulated on the basis of fvll-ts.me equivalents. was as follows.. 2020 2019 CEO Membership Secretsry ITllnformation Fundraising Administration and SUprt Change manager Development managers Tnv4tee remuneratlon No nEmbers of the Board of Trust*s received any remuneration during the year. Travel costs amounting to £192.69 (last year, £135.65) were reimbursed to 1 {last year, 1) member of the Board of TNstees. Related party transactlons The were no Related Paty Transactions during the year. No Tnth. or other person related to the AsscKiation. had ary personal interest in any tranSaCn. As a charty, The Neurofibromatosis Association is exempt from tax on income and gains falling within section 505 of the Taxes Act 1988 or s256 of the Taxation of Chargeable Gains Act 1992 to the extent that these are applied to its charitable objects. No L8x charges have ansen in the AsKlation. 15
The Neurofibromatosis Association Report and financial statements Notes to the financial statements for the year ended 31 October 2020 10. Tanglble fixod a88ets 2020 2019 Cost As at 1 N¢)vember Additions Remval offvlly depreciated assets at 31 October 4,538 960 927 5,455 4,538 5,498 Accumulated depreciation As at 1 November Charge for the year Removal of fully depreciated assets As at 31 October 4.075 8,482 1,048 5.019 4,075 Net book value As at 1 November As at 31 October 463 479 463 11. 2020 2019 Debtor Control Account Rent Deposft Other debtors Prepayments 76 520 14.953 14,558 15.078 12. Creditovs: amounts falling due vAthin one yeaf 2020 2019 Trdde Creditor5 Taxation Lottery Grant Other Creditors Accruals and deferred IrMe 20.434 4.474 10,000 2.658 38.412 12,906 3,088 3,783 28,564 48,341 16
The Neurofibromatosis Association Report and financial statements Notss to the financial statements for the year ended 31 October 2020 13. Anatysl8 of nat assots twO¢n funds Unrestrfcted Restrictod fvnd5 funds Total funds Tangible fixed assets Current assets Current liabilities 479 532,203 75,977 479 620,059 75,977 544.562 87.856 14.
vement in funds At1 Novomber Incomlng Outgolng 2019 Resourcgs Resources At31 October 2020 Restricted Funds Support Groups ResearchJNSA's Websf(elPlatfonn Camps NF2 Activities 3,744 68.711 3,744 67,256 53.563 55,018 16.851 89,311 16,851 87,856 53,563 55.018 Unrestricted Funds 460.739 271.673 275,706 456,706 Total Funds 325,236 330,724 544.562 Purposes of Restrthd Funds Support Groups.. Resear¢hlNSA's: Camps: NF2 activities: This grant is for the fvnding of SUPF)Ort groups in various parts of the {nty Donations made to be spent on Researchl Specialist Advisor Nthork. Donations restn.cted to spend on carrps for children DonatnS made speafically for the running of the NF2 a¢bvitEs each year 15. Financial commltments At 31 October 2020 the charity had annual commrtments under non-cancellable opetIng leases as follows.. 2020 Expiry date: Not later than one year Later than one year and not Later than five years 11,667 17 Tv