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 Tu￿￿ul5 UK Regtstered office army operatM)nal address.. 44 Cmte Lane West Wmbiedon Lond SW20 OLA Telephone.. Fax.. E.mail a(klress.' Website add￿$.. 020 8439 1234 020 8439 1200 nerVetur￿rS.org.uk .￿erVe￿W￿urs.(Xy.uk NeNe Tumourn UK {Nerve Tumours UK is the working of The Neurofibromatosis Assocr"ation. Pr*)r to 01 November 2018, the working name was The Neuro Foundation.) Board of Trustees The Cu￿nt Board of Trustees is." Michael Fry (Chairl Dr. Timothy Com Emily Owen Stewart Lee Richard Gc￿e Ivre Chairl Professor Rosalie Femer Jonathan Bru Rohan Chanmugam Senior Management P8raonnel The trustees delegate day-to-day manaJement ofthe charity to: Karen CockbLtm, Charity Director Patrons Gillian Anderson Independent Examingr5 David Howard Chartered Accountants 1 Park Road Hampton Wck Kingston- upJn- Thames Surrey KT14AS Banktt8 National ￿￿$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 O￿labOration 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$8 We provKJe practM>l and errL)tic￿aF advi* to help people find the best services and support available. We enable peoF4e to make chotis at(iut h¢Y4V they approach and live th neurofibromatosts. Advo¢ats We aim to increase knowledge, awareness and understsnding of NF, and will campaign for change in areas we believe will improve the lives of those affected by neurofibromatosis. We tske a PNOtal role in bringing together groups of people Inte￿sted in neurofibromatosis to maximise the support and information availabte to them. Connect Fund We make fijnds availab￿ for s￿￿11 projects to b)dtes and patient groups where we believe r( will make a difference. The ¢harity works with the following groups to xhieve its missb)n: Patients and carers Families with neurofibromatosi$ 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 SerV￿S 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, wh￿h 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 benefi￿arleS 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, deS￿n & production of lrterature has been brought back in house, and office rent has been reduced by 30% per annum. As we fvnd a fie￿Ort of Specialist NF Nurses knisors {Speaalist Advisors). our polry requires us to rrraintain 12 months of reserves. Although the charrty reacted very qU￿kty to the curftnt situatK)n, and we consider that we minimised the impact on our 0￿ratIonS, 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 medi￿1 profession. Our aim is to ensure that people are able to a￿sS 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 s￿￿list 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 e￿rIence 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 n￿1￿1 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 n￿th and our page views are up by 295%. Our website achieves an average of 38,000 users per n￿nth, with 63,562 in December 2020 alone. Nerve T￿r￿UrS UKS T￿tter reach Continues to grow steadily with 1.352 followers. Our byeets make an average of 80.333 iMpress￿S ￿ 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 cOn￿M$, 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 Medi￿1 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, wh￿h 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 ConstitUt￿n 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. wh￿h has the pjtents.al to develop a large number of complications. Some people with NF1 only having skin invotvement, but potential cOmpl￿at[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 r￿st 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 prO￿eMS 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 prOb￿rrts 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 Cond￿On. NF ha$ an irw on many areas of peo￿e'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 eff￿tsvenesS 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 ft￿nit0r all other options available. Reserves Pollcy It is Nerve Tumours UK wlicy to hold sUffiC￿nt unrestricted reserves to fund the Swalist Advisor ne￿Ork for 8 period of at least twelve months, and the ch*ty'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 I￿rOving 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. allho￿h 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 reqUI￿d to undergo DBS checks. Al Trustees. upon *tion. r￿t 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 v￿W 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 inf0m￿tIOn 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 in￿￿endent exarrunation is needed. Accordingly, Davtd Howard Charte￿j A(tountants. a fim ofaccountartts s￿la1￿¥j ￿7 charty ￿nts, have rev￿ed the followng financk41 statements. Small company provislon$ This report has been p￿pared 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 Tn￿ts0 & 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 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 Donat￿nS 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 ope￿tIng 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