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 H￿rOfibr0rnat0sIS 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 VI￿rking 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 man4eff*nt ofthe charity to."
Karen C¢xkbum, Charty Director
Patrons
Gillran Anderson
Simon Callow
Davkl Howard Chartered p£c(￿tarts
1 Park Ro￿j
Hampton v￿d[
Kingston- Thames
SLsrrey
KTI 4AS
S Market P*e
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￿ st*ements 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 R￿QmMerK1ed practi￿ I'charibes SORP'I {applicable to
chariknes preparing their accounts in accordance W￿th 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 NeUrOfit￿o￿￿lS'.
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 arol￿K1 the UK.
The mission for the charrty is to'Enable people concemed 8boLrt NeurOftr￿￿at0siS 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 authc￿lIa￿ye 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 throu*h fve key services to memws, supporters and ber*ficiaries. It
er￿eavOUTr 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 cho￿5 aboLrt huw Ihey approach and live
V+ilh neurofibromalosts.
We aim to increase knth￿edge, wKareress and underthnding of NF. and w7N campavJn for
change in a￿S 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 SUpp￿t and available to t￿.
Fund
We rrrake fvnds avallab* for small F￿jects 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 Ne￿Ork of Nurses and Adv
The research (parts"rAtsrty The Nerve Tum¢ws UK med￿81 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 co￿entrate t￿ its ¢entrJ fve services again thi8 year. The pandemic does not
detract from working to Strengthen and develop our core support StrU￿reS 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 C￿rnate 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 ￿￿n￿allorts. 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 complica￿OnS 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 po￿la1 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 all￿*d us to make a smal suWus in the I￿rrent finar￿la1 year.
As we fijnd a network of Spea81ist NF Nurses and Athisors Isrecolist AdvisoT5), our wlicy req￿reS 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 WI￿d. Our focus 1$ on can streamline our seNices.
e￿ordInate our work with partners and inyrove the edUCa￿n 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. Altr￿￿9￿ 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 apw1ntr￿nts.

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 hel￿￿ne 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)rk￿l9 via dinics. home vtsits, schools.
advisory servtces, and telephone consullakn.
The role of Specialist Advisors is very dNerse. We have had excel￿nI feedback from the faMi￿e$ 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 iNF￿M eff&tively, albeit vwiuaI￿.
Ne￿e Tumours UK continues to offer an exiensNe range of literature and irrf0m￿I0n. 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. Med￿1 professii)nals are also invited to use the Nerve Tumours UK national
helpline.
The Nerve Tumour5 UK Head Office team contmue to *YJrk excepts￿1￿ hard. They conts.nue to yo atwe and
beyond in ￿SpOnSe to the continuing falk*ut from the pandern￿. and the Board are On￿ again very gr*eful for their
efforts. Key Nvorkstreams have included the furtrw deveknpment of our websFte. in part￿￿lar 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 TV￿er reach contintses to
grow steadily writh 1,497 foll0v￿r$. 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 Sub￿berS to the Ner¥e Tumour5 UK has weased to 3.042. an i￿reaSe 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 Stre￿th￿ cmjr H￿tU￿1 partnershps wilh ¢Nganisations IndUdw￿ The
Small Charth"es Coalition. Embracing Comp￿XIty. 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 I￿ks￿¥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. SuPp￿ters, head Offi￿ staff and MedKal Advisory Board during
this unprecedented time. Trustees are very gralefid forthe eXception￿ty 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 (p￿VIOus￿ 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 chanta￿e
company and is govemed under its Artides ofAsso(yakn. In the evenl of the company being wound up members
are ￿quired by the adopted Constllut￿n 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 peO￿e w0￿￿￿¢je, N4thtch means that there are more than 25.000 in the UK. NF2 15 much rarer, with 1
in 35,000 affected woikfv￿del1,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. ev￿one has a risk of having an affe¢ted ch￿d
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 I￿L￿1e.. 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 tUrr￿rS-￿fftth a￿ usualty benwJn hcNRver 1 Lk15% of pelv￿ will develop a
malignant tumour related to their NF1. The nKJSt ￿gnIF*cant 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
$5te is on the hearing and balance neNes cau￿ng problems with deafr￿$ 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 S￿JnI￿Cant ￿MPlICatIons.
Neurofibromatosis is an unwedictable and vafiable 9￿￿tiC e0Th￿10n IfAt can afferA all pe￿e regardless of ger￿er.
race or age. During their lrfetime, pab.ents may see a vAde rarye of health and sctial care WofesS￿nal$. both in
¢ommuTrrty and hospitsl setbngs. The Specialist Advisors acl as a point of refwence for familie5 helping them
navigate through routine planned events and at times of (xtgs. Essentialty, their rde is to help peopk to learn to
live with their diagnosi$ ofneurofibromatosis ayj to eqimp It￿1 ￿1th the ￿￿￿￿￿jge (rfwhw). *twe, and how to
seek help, rf necessary.
As a MU￿1-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 serv￿eS 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. Th￿r setting may be ¢hThcal, wsrting families at home or telephone contact. The quality of the
relattonships they establish is cr￿¢81 to Iheir effeCt￿e$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 eXp￿KI1tUre 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 ho￿￿￿lty 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 n*Jmber of options and infomial a(fvice. At pre5enL given the current r*e of retum, the costs
involved in investing, and the in￿rent 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 be￿n the spending and weivÈng of i[￿rne and to cover unplanned
emergency expenditure. The trL[st￿s 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 COr￿ern.
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 tw￿fve mnths. Teserve5. If the charity promdes futher funding for Ihe
Specialist Advisor this ex￿dIture. and the ￿ reseNes. is W(ety to r￿Se.
Public Benefit
All our charitable a¢tvibe8 f￿$ on imFffowng the bves oflM)se affethd by NeUrfdxC￿S{S and are undertak
to fijrther our thanlabie purw)ses for putrlic b￿￿fft. The Trustees have regard to the Charty Commission's
guidance on the need for charities to detsver a publ￿ b￿efft and have compl*d Imlh duty in section 17(21 of the
char￿e$ Act 2011.
Recruitmenl Appointment & Induction of Board of Tn￿teeS
Under the rewmrements ofthe MerrKYarKlum aThJ ArtKles OfAs￿￿latt0n. 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 dIVe￿e rtwx of business. medKal aTrJ patienl expertise, there is no
requirefflent for a Board member to have any or i￿J1[eC1 exper1W￿ of NF. Our new Trustees are also
required to Undergo DBS ched(s. All Tntstees. Up[￿ eleL*ion. meet wtth CtAFr to disutss and agree speofic
requirements (rf the role.
The Trustees. are &so the of Ihe NeuroffiiYom*Jsis 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 req￿re$ the Trustees to prepare finarKial SI*m￿ts for each finanrial year whtch give a true and
fair view of the state of affaiT5 of the Charty and of the inccffnir*J 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 meth￿S and Fthciples in the Chwilies SORP,.
disctosed and explained in the financial Strt￿￿nts. aTh
prepare financial statements ￿ the going Cor￿ ￿lesS rt 15 irHpp￿prth to presume that the
Charity wdl eon*nue li Op￿at￿.
The Board of Trustees is responsible ma￿taIning 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 comp*ry and herKe for takirg reasonatle steps for
nbern of the Board of Tr￿1988
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 CharIt￿S 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$s￿l￿on Chartered CertIf￿d AC{xAK￿ it L8 my reS[h￿sibl￿ to:
examine the accounts under se¢lvJn 145 of the Charlies Act 2011 and under setaion 4411)(cl of tho
Charibes and Trustee Investn￿l {Scotland) Act 21x15 (the 2005 ￿.
to follow the ptocedures laid dovK] in the general DtrectM)ns given by the Charity Commission under section
14515llb} of the 2011 Act., aTrJ
Basss of independent examlnef8 rgport
My examination was caNied Lmrt in acc(xdm ￿ Ihe general DI[￿b"On5 given by the Charity CommBsion and rs
in accordan￿ vAth ReguEab"ons I l of the Charities Account5 (Seot5and) Regulation$ 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 reqU4rerr￿nts.
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 Reg￿￿tIOn 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 ￿￿erSta￿l￿ ofthe accwnts to
be reached.
Phili
Lano FCCA
Fellow of the Association of Chart¢r•d Certified At￿1n1ants
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 & Expandi￿re 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 I￿ludeS al tosses in the ye¥. All itKoming rpsources aThJ resources
expended derive from conlinuing ￿r￿m)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 c*arrtable to obtsin an a￿111 of ts fnanc481 stateff￿ts ts Ihe year
ended 31 Octhber 2021 in ￿OrdanCe wrth Section 476 of the Comp￿teS 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* sMal￿r
Enlities {effeclive January 20191.
Approved ty the Board of Trustees 07 Marth 2022 **J S￿￿d its l￿1[ 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 pri￿1paI accounting policies are summarised bdlyw. have been appl￿ consistentty
throughout the year arKI the wecediivj year.
Basis of accounting
The financial $tateft￿ts with the Ch*itie5 2011, the Cow¥)anies Act 20C6. Trustee
Investsnent (Scotlandl Act 2CI)5. the charrfies A¢￿￿nts {ScoVandl Regulations 2006 {as amended).
the Memorandum and Art￿leS ofAsso¢iabon. and Ihe Charities State￿Ent of Recommended
Practice fcharities SORPI lapplicabte to clwilies preparing their accounts in accordance vrilh the
Financial Reporting Standard appIlL¥b￿ in the UK and Re￿bI￿ of I￿19nd.. FRS 1021 effecbve from
1 January 2019.
The Neurofibromatosis Assc¢i*m meels the deffftition of a wblic benefft entity Lsnder FRS 102.
The Charity has taken advanlage of the FY0V￿lOns in the SORP for ¢harit*s apptyw FRS 102
Update Bulletin 1 rK>t to wepare a Statemert of Cash Fk7WS.
The financial statements are wepared in ￿er1ry. is the fvn(atonal currenry of the Chaiity.
Monetary amounts n these fin*￿￿81 slaiements are roun￿ to the ne*est £
The financial statements have been prepared under the historieal cost cOnvent￿n. modffted to
indude the revaluatson of freehold properb.es and to include investment wcperties and ￿rtain
finanaal instruments at fair value. The winc4pal accwnling policies adopted are set out below.
b)
Fund a¢￿untIng
Unrestricted fijrhts are for use at Ihe thtyelion ofthe trustees in furt1￿ra￿e of
the g￿￿ra1 obieclives ofthe Ctsw. and
Restricted funds are %*iected to restridio￿$ on their expenditure imposed by the donor.
Incoming YvJources
All incoming resources are induded Mi slatenEni of fmarK4al aCtsviti￿ t*knen the tharity is
entitled to tr* income. and the amount can be quanlÈfied wtth reaS￿bEe The foll￿1￿g
specific poliues are applied to particular i*gories 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 Ath￿e$ when r￿e1vable.
Grants. where entrfement is not Conditi￿21 on the deltvery of a spe¢ifK performance by the
charity, are recognised when the charity tseco￿ ur￿ndrt￿na1ty 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
I￿oMe 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 ￿$OUrceS from lrfets.me subs¢ripl*)ns wll be fulty accounted for in the
year in which the subsuiption is registered.
dl
Resourcès expgnded
Expendrture is recognised on an &crual basis as a lialxlty is in￿rred. Expenditure indudes any
VAT which cannot be fijly rec4)vered. and is repcwted as part of the expenditure lo which it relates..
Costs of raising fijnds comprise the costs assoriated ￿ryth attta¢ting voluntary income, and
also irKlude g0Veman￿ costs. These tndude those costs associ*ed with meetiro the
constitutional and statuw requirements of ￿ charrty and include the indeperKlent
examinerfees and costs linked to the strategic rna￿a￿e￿nI of the charity.
Expwditure on Charrtab￿ actNibes e4)mprises those costs incurred by the charity in the
delNery of its activities and seMce$ 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¢x*d eXp￿￿1￿e categories of the Sl*ment 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 deweu*ion.
o) Fix•d Ass•ts
Tangible fixed assets are inlialty measured a cost *KI $ubsequerthJ w*asured at cost or valuation, net of
dep￿￿ation and any impaimient b$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 opw*KJnal exisience for the foreseeab￿ future. Thus the
Trustees con*"nue to adopt the going o)ncem basis of aCC￿nting 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
SUbS￿pt￿Jns
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 Charit*e Trust
The Three Oaks Tnjst
The Nornian Fanwty chartab￿ Trust
The Baron Da￿ptsrt 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[ta￿e Trust
The Coral Samuel Charilable Trust
AW & CS FenwL* Charilable Tntst
The Fet￿Uary Foundati
The John Avins TFUSt
The Sir j￿e$ Thorn Charitabb Trust
The Roger & Douglas Tumw Trust
The Thomas J Horr¢ mem￿lat
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
Fyndrd￿ir
24J92 2132T
46,719
112.c￿6
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 OCto￿r 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 re￿Ned 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￿ Per￿1.
The average numter of employees dwiThJ y￿. *ul*d (x) the b￿S offuiktime &4uivalents. wa5 as follows:
2021
2020
CEO
Membership Seuetary
ITllnfomation
Fundrai￿ng
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 ￿l*d 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 Ch￿eable Gains Act 1992 to the exlent th* these are app￿led to
its charitable objects. No tax charge5 have artsen in the Associati{￿.
10.
Tanglble flxed assets
2021
2020
As at 1 November
Add￿OnS
Removal of fvlty depr￿lated
assets
As at 31 Octob
5.498
3.115
4,538
8.613
5,498
Acc￿n￿lated 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
ReSearCh￿SA'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 SUpp￿t gmw>s in warifJJs paits of the county
Donations made to be spent on Researth S￿lIst Advisor Netw￿k.
Donations restricted lo spend on camps for chIld￿n
Donations made speafully forlhe Tunning ofthe NF2 eath year
15.
FlTrancial tommitments
At 31 October 2021, the charity had annud commitsnwts uThJer ￿r￿CanCellaNe ¢¥wating leases. following rent
renegot￿tionS. 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