Charity re8islralion number. 1152445
Wolfram Syndrome UK
A Thnual Report and Financial Statements
for the Year Ended 29 February 2024
Hodson & Co
Wiston House
I Wiston Avenue
Worthing
West Sussex
BN14 7QL

Wolfram Syndrome UK
Contents
Reference and Administrattve Details
Trustees, Report
2108
Statement of Trustees, Responsibilities
Ind¢pend¢nl Examinels Report
10
Statemenr of Financial Adivities
Balance Sheet
13
Notes to the Financial Sialements
141026

Wolfram Syndrome UK
Reference and Administrative Details
Chalrman
Mr J Ishenvood
Trustees
MrANye
ProfT Barr¢Él
Mr P Lynch
Mr J Ishenvood
Miss A Gardner
Senlor ManAgement l Leadershlp Mrs T Lynch, Chief Executive
Tea
Dr G Isherwood PhD, Conlracis Manager
Charlty Registratlon Iyumber
1152445
The charity is incorporated in England and Wales.
9 Church Way
Tdrrin¥
Worthing
West Sussex
BN13 IHD
Reglstered Office
Independent Examlner
Hodson & Co
Wislon House
I Wislon Avenu¢
Worthing
Wesl Sussex
BN14 7QL
Page I

Wolfram Syndrome UK
Trustees, Report
The Iruslees. wlio are directors for the purposes of coinpany law. present the annual report logcther with the
rinancial statements of the charitable company for the year ended 29 February 2024.
ObJe¢tlves and activhtles
Obje¢'¢s aims
WolfFam Syndrome IWS) Is a genetic disorder causing Diabetes Insipidug, Diabetes Mellilus, Oplic atrophy and
deafi)ess. It affects children and adults and there is currently no knO￿,n cure. There are currently around I l O
people diagnosed with WS in the UL This number is ri$ing and expected to reach 150 due lo itbL'reased genetic
testing and improvement5 in the diagnosis of partial Wolfram. WSUK exists lo meet the needs of ih¢ WS
community - the children, young peopl¢ and adulis affecred by WS and their families. Due to ihe rare and
under-researched nature of this illness, diagnosis currently takes 3-6 monihs and involves several ihousand lesls.
There is only one recognised ¢eiilrc of expenise foi. children, which is al Birmingham Children's Hospital. and
for adults, at Queen Elizabeth Hospital Bimiingham. therefore, it is believed that many cases may not be
recognised.
WSUK raises funds to help finance fijrthcr rcsear¢h and through it5 ¢-new51ettcrs, wcbsitc and annual
conference increase levels of awareness. knowledge and urtderstsnding of this illness. These a¢liviiies benefit
not only lho.qe LUTTenily affected bul also those diagnosLd in the future and their families, not lea81 in su%taining
an cnhanced nAtional focus on findin8 effectiv¢ treamienis and an eventtMI cure.
For those cu￿entlY affeclcd and their families. WSUK maintains a voliinlary register and distributes inforniation
about its aims, objectives and activities, WSUK provides direct and practical benofil through inforniation,
on-goin8 front-line support. advice and guidance. Further pr8cti¢al and emotional benefit is provided by WSUK
lo families living with WS in rhL fonn of an annual confer¢nce, activities I projeLls for spe¢ifi¢ mellibers of Ihe
WS community (e.g., WS affected adults) and virtual or in person family I community meelmgs.
As it is important for the WS community 10 h&ve opportunities to meet in be￿Cen the 8nnu&l conferenees.
WSUK aims lo provid¢ social ¢vcnts that enablc rnembcrs of the WS community build r¢laiionship8 and provid¢
peer support in & safe and welcoming space. This may include r¢gul8r on-line sessions for small groups, and l or
in person events or family days at venues around the country. It is intended that WSUK in person events are
organised at little or no co.st for fainilies and individuals to help maximise participation. In addition, WSUK will
aim lo organi5e "take & break" opportunities for parents and carer$ 8t an affordable cost.
For the benefit of current and fvture WS affected people the level of awareness. debate and research among the
public and within the professional community of medical practitioners is raised through a number of
di8semiiiation activities organiscd through WSUK. From the professional fnrums initially organised ai the
Binningham clinic, WSUK will b¢ able to identify poleniially valuable re$¢ar¢h opporNnilies that it Can 5UPPOrt
through its family network und financially. The WSUK website is also used to further di55eminaie research
resu118 and publications.
Ail of thcse activitics arc aimed at b¢nefiting all of Ihc families regi5t¢rcd with WSUK without any ￿rth¢r
restri¢tion and regardless of tlieir ability lo contribute financially. At Ibe discretion of the Iruslee's, financl
suppori will be provided whLre poverly is a ba￿ler lu benefil. There will be no private benefils lo anyone from
WSUK oihcr than a￿+ a ben¢fi¢iary of its statcd aims and activilics.
No d¢trimeni or barm will arise fmm Larrying out any of the aims, objectives or aLlivities of WSUL(.
Pmbllc benefil
The ttustees have refe￿ed to the guidance contained in the Charity Commi8ison's general guidance on publi¢
benefit when reviewing the chai'ftty's aims and objectives and in planning ￿tUre activities.
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Wolfram Syndrome UK
Trustees, Report
The trustees confinn that they Iiave complied with the requirem¢nls of section 17 of the Charities Act 2011 to
have due regard lo the public benefit guidance published by the Charity Commission for England And Wales.
Achievement5 and performance
WS Community Support
During 202312024, WSUK conlinued tu provid¢ expert support activilies and servi¥es lo the WS covnmunily.
spCc￿lCa1IY Ihrough thc following.. _
l. Contract with Birniingham Women's and Children's NHS Foundation Trusi (BWC NHSFT) lo support the
WS ¢linic services for ¢hildr¢n and young people.
In October 2023. WSUK Successfully cornpleled the first year of its contract with B WC NHSFT lo support the
WS Mulii-Disciplinary Team (MDT) clinic services, part of the NHS England Highly Specialised Service.
provided lo affect¢d Children and young people, and their parent carers and wider family members.
Ai the end of YI (i.e. Ocl 2023). the WSUK Family Support Co-ordinator (FSC) was eitlier supporting or was
actively engaged with the majority {760/0) of young people and their families and had delivered or was actively
delivering a total of 80 sUPPOrt iysues (e.g. supporting Education. Health and Care Plan (EHCP) applications or
providing cmotional support lo parents). Durirtg YI, 6 faiiiilic5 ￿ceIVed a home vi51t from the FSC.
By Oct 2023, the FSC had also successfully supported the four WS MDT clinics ai BCH, whi¢h were att¢ndcd
by a total of 20 children / young people in person and 3 vimi2lly (23 total; 9 of whom were new referrals) and
their parent carei'4. One imponant metric for the B WC NFISFT team And NHS %takeholders 15 the number of
families who do not attend clinic as expected {i.e., "Did Not Attends": DNAS) and aim for the service to achieve
the minimal number of DNAS as possible. As all families attended each of th¢ WS MDT clinics during 2023 as
expeclcd, the number of DNAS was zero - a very posltive Bchieveinent.
Sorne of WSUK'S on-80ing a¢livitie8 conducied 10 8UPPOrt or infom the WS cornmunity, ¢ontinue to forni part
of the new contract B WC NHSFT, namely - i) Annual Conference, ii) managing the WSUK database, iii)
WSUK website and iv) quarterly F.-Ncwslcit¢rs.
In September 2023, WSUK held a face-io-face UK Annual Conference ai a new venue which Catered for mony
of our cominuniiie8 needs. The UK C.onferencc provided the opportunity for memherg nf the WS communily t()
cortn￿t with cach oth¢r in pcrson and cngage wilh WS health profcssionals in a non-clinic sctting. Prcscnlalions
both were recorded and uploaded onlo the WSUK website, to enable those who were either unybl¢ to attend or
part of the ex-UK global community lo hear the latest updates from WSUK. researchers and representatives
from othcr rclevant organisalions (liltps.'l/woiframsyndromc.co.U￿ws-confcrcneC}. As part of Ihc confcrcnco.
two first aid workshops were held tor a total of 24 attendees to learn Basic Firsl Aid skills. These proved
popular and will be considered for future events.
Throughoyt the year. WSUK has continued to regularly update the charity websile
(https.'//wolframsyndrome.co.uL9 to ensure that it provides the WS community wiih a¢curale, current and
family-friendly inforniation on Ws-related issues. which 15 medically endorsed. In &ddiliun, WSUK has
continued 10 deliver qltarterly e-newsl¢tters to all those in the WS community and its supporters who elect lo
receive regular updates. Each newyletter in¢ludes information on a range of tOPlC5 for example, updale5 on the
lalesi res¢ar¢h. includtng the TREATW01fr￿yj clinical trial. Each n¢w51etter 15 distributed by email. uploaded on
the WSUK website. and shared via WSUK social media. To help ensure the tsnewsletter is as accessible as
possible, visually impai￿d (Vl) members who use a screen reader receive a text alternative tsr any included
images. In addition, an audio version 15 made available through the WSUK website and social media accounts.
and a large font printed copy 18 Posted to a small number of members, where specifically requested.
Page 3

Wolfram Syndrome UK
Trusteesl Report
2. Enhanced support for WS affected adults,
During 202312024, the WSUK Adult Support Co-ordinator (ASC) continued lo engage with the WS affeC￿d
aduli communily to provide enhanced support ihrough activities such as.. .
i. Attendance at tbc WS Adult MDT clinics 4t Queen Elizabcih Hospilal (QEH).
By Feb 2024, the ASC had atlended a tolal of 4 WS MDT clinics at QEH (80% of S clinics held) lo meei WS
ff¢clcd adults and th¢ir fdmily rnefflb¢r￿ in person and belttr UDdcrsland their 4ilu81ion. currcnl challLD¥e,8 Éind
support needs. Through attending thcse ¢linirs in pcrson, the ASC alsu has built strong, positiv¢ r¢lationships
with the adult clinic lead and oiher members of the MDT team.
ii. The Emotional Wellbeing (FWB) prL)j¢Li for WS affeLled adults.
In Nov 2023, WSUK completed the EWB proj¢¢t. which was designed lo help empower WS affected adults to
improve their emotional wellbeing And funded through a syrant r¢¢eived from the National Lottery Community
Fund. As part of this project, the ASC held personalised l.. I monthly support sessions wiih 13 WS Affected
adults, and 4 adults have continued with these sessions beyond the end of the project. In addition, the ASC held
interactive peer wellbein8 SUPPOrt sessions lo provide a safe and welcoming space for WS affected adulis lo
connect and help each other. Wellbeing resources. on different aspects of w'ellbeing from a range of recognised
50urce8, have also been made available on WSUK website for everyone in the WS community
{https:Ilivolframsyndrome.co.uklour-proje¢tsfj.
iii. On-going tront-line support
In addition to the WS MDT ¢linics and EWB projeci. the ASC has supported WS affected adults and their
families with a range of other issues such as oecessing adLIII social Care, housing adaptation5 and attending MDT
rneelirL¥s on EHCPslfurthcr education. By Feb 2024, thc ASC had conducted 6 liom¢ visits 10 help supporl WS
affeclcd adu115, wliich included for examplc. a n¢wly dia¥noscd family, a fainily willi liousing adapialion ne¢ds
and supportin8 2 young adults with their Lnenlal health.
Through all these activities. the ASC bas successfully cslablished slrong and trusted relationships with many
WS iiffected adults and has started building connections within Ihe adult cojnniunity for peer-lo-peer support.
There is a clear need for ¢ontinu¢d on-going support And therefore WSUK intends lo devclop new a¢tivilic5
during 2024125 to further engage and help the WS adult community.
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Wolfram Syndrome UK
Trustees, Report
Research
I. TREATWolfram Clinical trial
A total of 63 children, youn8 people and adults have been recruited 10 the TREA Twolfram clinical trial across
the UK and at three other international sites. WSUK has previously provided funds lo this trial to help support
patient visit ¢osts for UK participants. The first young people who were recTuiied at Bimiingham Cliildren's
Hospital. have now completed iheir last patieni visits, while the final patients recruited will complete tlieir last
visits iii O¢tober 2024.
The final WSUK pa)ryncnt lo support TREATWolfram was originally deferred following patient reC￿lIMent
delays due to the COVID pandemic. During 2022123. the trial lead confm¢d Ihal addilional funds would not be
Tequired for the r¢m8ind¢r of the study and in addition, iiny burplus fvnds would be rebjrned to WSUK once
final payments had been made. A8 such, both the final pa￿nent and any surplus will retnain r¥$lricled funds and
will be allocated to h¢lp suppon fiJtur¢ clinical trials ionductcd in the UK or other rcsearch acliviiies.
2. WSUK Scientific Advisory Board
In February 2024, the WSUK Scientifi¢ Advisory Board (SAB) mel to discuss the researoh proposals received
for the small grant fundin¥ of £15,000. A deLision was made lo award these fund5 10 & ￿￿earLh projecl in
Bimiingham Ihai hAd some links lo the TREATWolfram project. The fvnd5 will bc rcl¢as¢d in the ncxt financial
year li.e. 202412025) due ia the timing of thc SAB decision in February 2024.
3 WS International Research Symposium
In April 2023. WSUK co-hosted the 8th WS Iniernational Rcsearchers Syniposium in Surrey. 30 researchers aiid
Phama representatives from around the world spent 2 days discussing their current research projccts &nd clinic
trials. The pro8ramrne wa8 8pe¢ifically designed to give participanis lime to hear the prescnlations, ask
queslions and chal with other researchers infornially betwecn s¢ssions, and ha5 resulted in some new
¢ollaboraiions bettve¢n global res¢ar¢h t¢&ms. The SylnPOSlLim ended wilh oll participants collaborating on a
CURE4WOLFRAM Action Plan, wljich will be di5CU55ed at Ihe next symposium planned for late 2024 the
Page 5

Wolfram Syndrome UK
Trustees, Report
Fundraising
Consistcnl with previous years, fundraising activities were conducied throughout the year by the WSUK team.
Ihe WS commwiity and its supporters. Specific examples include, but are not limiled to.. -
Monthly donations -
Members of the WS community and WSUK supporters continued with Iheir regular monthly donations, which
were g￿atlY received and hugely appreciated.
ii. Local fundraising events by WSUK supporters-
Examples include: . a local recruitment company hosted 2 charity football matches during the year. WSUK
attended each event 10 5UPPOrt the players, raise the awareness of WS and highlight how their donations help
this community.
iii. Community donations-
Throughout the year, fflembe￿ of the WS community completed tiindraisirtg activities or made donations lo
help qupport the charity.
iv. Allnual Golf Day event-
The Ioih WSUK Annual Golf Day was held in July 2023. The pL￿1¢1paI1ng teams, many of whom have been
involved in previous events, raised a record amouni for the ¢harity.
v. Sale ol'UK branded items -
Similar with pi'evious years, items such as Christmas cards, water bottles and pcn5 were sold through both the
WSUK website and social media accounts, conference and at eharity fundrdising events,
vi. 80,% night-
In April 2023, WSUK held ils popular 80's night, which wus wcll Attcnd¢d as always.
WSUK thanks evcryone in the WS Community and its support¢r5 for their coniinued support in helping the
charity lo raise fi￿d5 lo deliver ils important work.
WS Global Awareness Day I st October
The third WS Global Awaff ness Day took pla¢¢ on October I sl 2023, which fell the day after the annual
conlerence, WS related information was distributed 10 global organisations to help raise their awareness of the
condition. WSUK intei)ds to hold ihe founh WS Global Awareness Day on I sl Oelober 2024.
Flnonclal revleiv
Total incoming resources for the year were £136.399 (2023: £108,116) with expenditure of £113,865 (2023:
£64.911). Overall, there was a surplus for th¢ y¢ar of £22,534 (2023.. £43,205). Unrcslrictcd funds at the
year-end were £37,569 (2023.. £31,937) and the restricted fundy were £93,457 (2023.. £76,555). Total funds for
the year were £131,026 (2023.. £108,492).
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Wolfram Syndrome UK
Trustees, Report
Policy on reserves
The trustees have examined the charlty's requirements for reseTYes in light of Ihe main risks to the OTganisalion.
The Irustccs consider that the present l¢v¢l of funding will bc adcquale to support thc continuation of ihc charily
and for it to fulfil its obligations.
Jiives¢menlpoliLy and objeclives
The objects of the company authorises it to invest and deal with moneys not immediately required for its
purposes in and upon such investments securities and property as may be thought fit.
GolDg concern
The charity has reviewed it's fLnancial perforniance and general reserves position. The charity has adequate
financial resourLeq and is able lo manage il's business risks. The charity's planning process has taken inio
consideration th¢ ¢uffent economic climate and its potential impact on the various sources of income and
planned expenditure,
Taking into account all fa¢tors the charity has reasonable expectation that it has adequate resources lo Continue
in operational existence for the foreseeable future and believe that theie are no material uncertainties that call
into the charity's ability tn continue in operation.
Accordingly, (he accounts liave been prepared on the basis that the charity is a going eoncem.
Stru¢turei govern*n¢e and mAnagem¢nt
alure ofgovernlng documenl
Wolfram S￿)drOM¢ UK is a Cl)ariiable Incorporaicd Organisaiion regisleicd on 17 Junc 2013 with the Charity
Coimmission of England and Wales (no. 1152445). The Lharity's working n8me is WSUK.
Trustees
MrANy¢
Prof T Barrett
Mr P Lynch
Mr J15herwood
Mis5 A Gardner
Mr N Mistry (resigned 4 June 2024)
Recrultmenl 4nd appolnthienl oftrustees
The Board has the power lo appoint additional trustees as it considers fit to do so.
None of the trustees hAs any beneficial interest in the charity.
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Wolfram Syndrome UK
Trustees, Report
Ind4¢tion and troifting of trustees
Potential trustees are Selected on the basis of iheir personal qualilies and Ibe complex issues involved. A
sp¢ciality Itnking to charity need5 is also sought. New iruslces are made familiar with the eharity vision,
operation and goals by dialogue with existing personnel and provision of minutes and other literatur¢ pertaining
to charity activity.
AII tNstees are already familiar with the practical work of the charity. New t￿SteeS are encouraged lo atteiid all
manageinent ¢omtnittee meeiings. Short training sessions (if required) lo familiarise new trustees with th¢
charity and th¢ context within which il operates are provided.
Organi.Faftonal struclure
The charity is or8&ni5ed so that the trustees meet regularly to manage its affairs. The trustee8 meet at least
quarterly with additional meetings as required. The charity is overs¢en by the trustees, supported by volunteers.
The organisalion operates in Ihe UK from premises in Church Road, Worthing,
Kcy strategic and adminislralive decisions are made by agrcement of ihc tTuslees. and dclcgatcd as appropriate.
Day to day management of the charity is delegated lo the Chief Executive, Mts Tracy Lynch.
Flnanclal Instruments
Objecrlves andpolleles
The Lharity only has f￿ancial assets and fmancial liabilities of a kind that qualify as basi¢ financial instruments.
Basic financial instruments are initially recognised ai transaction value and subsequently measured at their
settlement value with th¢ exception of bank loans which are subsequently measured at amortised cost usin8 the
effective interest method.
The annual report was approved by the trustees of th¢ charity on ,(s/i,i/?,4.. and si8ned on its behalf by..
Mr J Isherwood
Chainnan and trustee
Page 8

Wolfram Syndrome UK
Statement of Trustees, Responsibilities
The It￿51¢¢$ are responsible for preparing tlie in]slees' report and the financial statements in accordance with
applicabla law and United Kingdom A¢¢ouDtin8 Standards (United Kingdom Generally Ac¢epted Aceounling
Practice).
Cliarily SORP requires th¢ tnisiees io prepare financial statements for each financial year. The tru51ee,s must not
approve Ihe financial statements unless they are satisfied that ¢hcy give a truc and fair view of the ¢harity and of
the incoming resources and application of resources, including its in¢oni¢ and expenditur¢, of the charity for that
period. In preparing these financial statements, Ihe trustees are required to..
5¢1ecl suitable accounting policies and apply Iliem consislenily.
observe the methods and principles in the Charities SORP:
m4k¢ judgcmcnts and cslimales that are rcason&blc and prudcnt:
statc whether applicable Bccounting slandards have been followed, subject lo any material departures
disclosed and explained in the finaneial statements. and
prepAre the financial statemenrs on the going concern basis unless it is inplppropriale to presurne that the
¢harity will continue in business.
The trustees are responsible for keeping accounting records that disclose with rcasonable accurdcy at any time
the financial position of the ¢harily. They are also rcsponsible for safeguarding the &sscts of thc charity and
hence for rakin8 reasonable s*PS for the prevention and deteclion of fraud and otlier irregularities.
Approved by the Iruslees of the charity on .i.f/,I i /hf and signed on its bchalf by:
Mr J18henvood
Chaim)an ond tiustee
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Wolfram Syndrome UK
Independent Examiner's Report to the trustees of Wolfram Syndrome UK
I report to the charity trustees on my examinaiioii of th¢ accounts of tlie Chariry for th¢ year ended 29 February
2024.
ResponsAbilltle$ 4nd ba515 of report
As the charity's tNStees you are responsible for thc prcparalion of the accounts. Th¢ cbarily's trustees consider
that an audit 1% not required for this year under section 144 of the Charities Act 201 l ("the Charities Ac¢") and
that an idependenl examination is needed.
Having satisfied myself that the charity is not subject to audit under company law and is eligible for independent
examination, it is my responsibility to.,
examine the accounts under section 145 of the Charities Acl,
io follow the procedurcs laid down in the general Directions given by th¢ Charity Commission (under section
145(5)(bl of th¢ Charities Act), and
• lo slate whether paff icular matters have come lo my attention.
Bisls of Independent examlner's statement
My cxaminiltion was carried out in accordanc¢ wilh gen¢i71 Dirc¢lion$ given by the Charity Commission. An
¢Xiuninalion includes a r¢view vf Ihc ￿counting records kept by the charity and a cun)pari50n of the accounts
presented with Ih05e records. li also includes consider81ion of any unusual itcm5 or dis¢10sures in the accounts,
and s¢ekin8 cxplanalions froiii th¢ trJsiee8 concerning any such niatters, Tlye pro¢edur¢s undertaken do not
provide all the evidence that would be requircd in an audit, and consequently no opinion is giv¢n as to wheiher
the a¢count5 present a 'true and fair. view and the report is limited to those matters Sel out in Ihe ￿atement
below.
Independent examiner's statement
In conne¢tion witb my examination, no material matters have come io my attention which 8ives me cause to
believe that in, any material rcspecl..
the accounting re¢ords were not kept in accordance with section 130 of the Lharilies Act; or
the accounl.s did nor accord with the accounting records: or
the accounts did not comply with the applicable requireinents Concerning the forn) and content of accounts set
out in the Charities (Accounts and Reports) Regulations 2008 oiher than any requirement that Ihe accounts give
a "true and fair" view which is not a matt¢r considered as part of an independent examinaiion.
have come across no other matters in connection with the examination lo which allenlion Should be drawn in
this report in order to enable a proper understandin8 of the accounts to be ￿a¢hed.
Matthew Hodson FCA
Independent Ex&tnin¢r
Wision House
I Wi51on Avenue
Worihing
Wesl Sussex
BN14 7QL
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Wolfram Syndrome UK
Statement of Financial Activities for the Year Ended 29 February 2024
(Including Income and ExpendRture Account and Statement of Total Recognised Gains
and Losses)
Total
2024
Unrestrlcted
Re5trieted
Note
Income and Endoivm¢nt$ from:
Donations and legacies
Otlier trading activities
Investment income
15,108
45,737
500
24,392
50.662
39,500
96,399
500
Total Lncome
136399
Expendlture on:
Raising fvnds
Charitable activities
(48,478)
4,737
(48.478}
65,387
60,650
Total Expenditure
Net income
Transf¢rs belween funds
53,215
60.650
(113,865
8,130
2,5th)
14,404
22,534
Net rnovemenl in funds
5,630
16,904
22,534
Re¢oTrelllatloTr of tsnds
Total fimds brought fonvard
31,939
76553
108,492
Total fund8 carried forward
18
93.457
131026
The nolas on pages 14 to 26 forn] an integral part of these financial statements.
Page 11

Wolfram Syndrome UK
Statement of Financlal Activities for the Year Ended 29 February 2024
(Including Income and Expenditure Account and Statement of Total Recognised Gains
and Losses)
Total
2023
Unrestricted
Restrlcted
Note
Income 4Dd Endowments from:
Donaliollg and legacies
Other trading activities
Investment income
28.658
20,895
19
4.819
53.725
33.477
74.620
19
Total Incom¢
108.116
Exp¢ndlture on:
Raising funds
Charitable activities
(25,335)
9,979
(25.335)
39,576
29,597
Total Expenditure
Net income
29,597
64,911
Nct movement in funds
14,258
28,947
43,205
Reconclllatlon of funds
Total funds brou8h¢ forward
Totul thds Carried forward
17,679
47.608
65,287
18
108.492
All of the charily's aclivilie8 derive from continuing operation% during the above two p¢riods.
The funds breakdowm for 2023 is shown in note 18.
The not¢5 On pa8es 14 to 26 forni an integral pan of these financial statements.
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Wolfram Syndrome UK
Balance Sheet as at 29 February 2024
2024
2023
Note
Flxed #5set5
Tangible assets
14
241
147
Current assets
Stoeks
Debtors
Cash at bank and in hand
15
16
425
1.] io
l31.816
837
671
108,066
133.351
109,574
Credltors: Amounts falllng due withln one year
17
(2,566
1,229
Net (urrent asse1$
130 785
108 345
Net Assets
131026
108.492
Funds of the ¢harlty:
Re$trlcted Income funds
Rcstrictcd funds
18
93,457
76,553
Unrestrleted Income fund$
Unrestricted ￿ndS
37,569
3l,939
Total fund5
19
131026
108 492
The fi
ancial 8ts1em¢nts on pages 11 10 26 were approved by the ITusie¢s, and auihorised for issue on
.£F and signed on Iheir b¢haif by:
Mr J l%herwood
Chaiman and Trust¢¢
The notes on pages 14 to 26 forni an integral part of these financial slatemenl&
Pagc 13

Wolfram Syndrome UK
Notes to the Financlal Statements for the Year Ended 29 February 2024
I Charlty status
The charity 15 a Charitable Incorporated Or8anisa170n (CTO) and conseqiiently does not have share c2Pltal.
The address of its ie8i5t¢red office is..
9 Church Way
Tarring
Worthin¥
West Susscx
BN13 IHD
2 Accounling pollcles
Summary of slgnltl¢&nt aecountlng pollcle5 and key accountlng estim8te$
The principal accounting polici¢s applied in th¢ preparation ot'ihese financial ststemenls are sel out below.
These policies have b¢en ¢onsist¢ntly applied to all the years presented, unless oth¢rwi5e slated.
Statement of eompliAThce
The financial .%lalemenls have been prepared in accordance wilh Accounting 8nd Reporting by Charities.,
Stalenienl ol'Recommended PraLlice (applicable lo charitics preparing their accounts in accordance with the
Financial Reporting Standard applicablc in the UK and R¢publi¢ of Ircland (FRS 102)) (issued in Octobcr 2019)
- {Chariti¢s SORP {FRS 102)). the Financial R¢poning Standard applicable in the UK and Republic of Ireland
(FRS 102) and the Companies Aci 2006.
Basis of prepAratlon
Asseis and liabilities 8re initially r¢co8nised ai historical cost or transaction valiie unless oiheDvise siaied in Ihe
relevant accouniin¥ policy noles.
The financial statements ar¢ prepared in 81crling, which is Ihc ￿nctiOnal currency of the entity.
GolAg ¢oncern
Thc Iruslecs consider that there are no material uncertainties about Ihc charity's ability lo continue as a going
concem nor any significant areas of uncertainty that affccl ihe carying valuc of a55Llts hcld by Il)e charity.
Income find endoivment$
All income is ￿COgnised once Ihc charity has entitlement to the income, it is probable that the income will be
received and rhe amount of the income receivable can be measured reliably.
Donadolls and legacies
Donaiions a￿ recognised when the charity has been notified in writin8 of both the amount and settlement date.
In the ev¢nt that a donation is subject lo conditions Ihal require a level of perfomiance by the charity b¢forc thc
¢hariiy is entiiled to the funds, the income is deferred and not recogntsed until cither those conditions arc fully
met, or the fulfilmenl of those ¢onditions is wholly within ihc control of the charity and it is probable that these
coiidilions will be fulfilled lll the r¢portiD¥ period.
Page 14

Wolfram Syndrome UK
Notes to the Financial Statements for the Year Ended 29 February 2024
Grants receivable
Grants a￿ reCO￿lSed when ihe charity has an eniitlement 10 the funds and any Conditions linked to th¢ grants
hav¢ been mel, Whcrc pcrforniance conditions are attached to the grant and ar¢ yet to be inet, Ihe income 15
Tecogntsed a6 a liability and included on the balance sheet as deferred income to be released.
Investment IhL'ome
Dividends are recognised onL¢ the dividend has been declared and notification has be¢n received of tbe dividend
due.
Expendllure
All Cxpenditure is recognised once there Is a legal or constructive obligation to thai expenditure. tt is probable
settlement is required and the amount Lan be measured rcliably. All costs are allocated to the applicable
¢Apendilure her4ding that aggregate siinilar costs to that category. Where costs cannot be directly attributed to
parti¢ular headings they have been allocated on a basis which is reasonable, justifiable and consistanL
Ralsiiigfvnds
These are cosis incurred in attracting voluntsry income, the management of investinenls and ihose incurred in
trading a¢iivities that raise funds.
Charitable aeilvllles
Charitable expenditure comprises those costs incurred by the charity in th¢ delivery of its aclivilie5 and service5
for ils beneficiaries. 11 in¢lude5 both costs that can be allocated dire¢ily lo such activities and ihose costs of an
indirect nature n¢¢¢ssary lo support them.
Support costs
Support Costs include c¢ntrol functions and have been allocated 10 activity cost categorie5 011 a basis consislcnt
with the use of resources, for ex&mple, allocating propety costs by floor area$, or per cApila, siaff ¢osls by the
lime spent and other costs by their usase.
Governance costs
These include the costs allributable to the charity's Compli￿¢¢ with conslilulional and slatulory r¢quiremenls,
includin8 audit. slralegic manag¢ment and tnL81¢es mectings and r¢imbur5cd exp¢n5CS.
Taxation
The charity is ¢on$ider¢d to pa$s the tests set out in Paragraph I Schedule 6 of the Finance Act 2010 and
therefore it meets the definition of 8 charitable company for UK corporation lax purposes. Accordingly, the
charity is potentially exempt fn)m iaxation in re5pe¢l of income or capital gains received within calegories
covered by Chapter 3 Part I l of ihe Cory)oration Tax Act 2010 or Section 256 of the Taxation ot Chargeable
Gain5 A¢1 1992, to the exi¢nl that such income or gains arc applied exclusively to charitable PUTPOSCS.
Tftngible flxed assets
Individual fixed assets are tnilially recorded al cost, less any subsequent accumulated deprecialion and
subsequent accumiilaled impaimient losses.
Depreelatlon and amorti$ation
Depreciation is provided on tangible fixed assets so as to write off the ¢osi or valuation, less any eslimaled
re%idual value, over their expected useful econoinie life a.% follows..
Page 15

Wolfram Syndrome UK
Notes to the Financial Statements for the Year Ended 29 February 2024
Asset elAs5
Plant and machiaery
Office equipment
Depreciation method Ind rate
over 4 years
bettveen 2 and 5 years
Impairment of fixed xsset$
A review for indicators of impairnient is carried out at each reporting date, with ihe recoverable amount bein8
estimated where such indicators exist. Where the carrying value exceeds the recoverable amount, rhe asset is
impaired accordingly. Prior impaim?ents are also reviewed for possible reversal at each reporting date.
Rese&rch and development
Research and development expenditure is wriiten off as incurred.
Stoek
Stock is valued at the lower of cost and e.qlimated sellin8 price les5 CO518 to complete and sell, after due regard
for obsolcte and slow moving st￿kS, Cost is deterniined using the first-in. r￿St-out (FIFO),
Cash and cash equfivalents
Cash and cash equivalents comprise cash on hand and call deposits, and other short-tenn highly liquid
investments that are readily convertible lo a known amount of cash and are subject lo an insignificant risk of
change in value.
TrAde credltors
Trade Credito￿ are obligations 10 pay for goods or services that have been acquired in the ordinary course of
busincss from suppliers. Accounts payablc are classified as current liabilities if the charity does not have an
un¢ondilional right, al the end of Ihc reporting period, lo defer settlement of the creditor for ai least twelvc
rnonihs after the reporting date. If tl)ere is an unconditional right to defer Settlement for at leasi nvelve months
after tiie r¢portln8 daic, Iliey are presented as non-current liabililics.
Trade creditors are recognised initially at the Iransaciion price and subsequenily ineasured at amortised cost
using the effective iijleresl method.
Fund structure
Unr¢$lricied income funds are general funds that are available for use al the trusiees diycrelion in furtheruiice of
Ibe objectives of the charity.
Designated funds are unrestricted fvnds earniarked by the trustees for particular fiJtur¢ project or commitment.
Restricted income funds are ihose donated for use in a particular are& or for specific purposes, the use of which
is restricted to that area or purpose.
Flnanelal Instruments
Classification
The Charity only has financ7al assets and li8biliies of a kind that qualify as basic financial instruments. Basi¢
financial instruments are initially recognised ai transaction value and subsequently In¢asured al Iheir settletnenl
value with the exception of bank loans which are subsequently meayured al amortised cost iising the eff¢¢tiv¢
interest method.
Page 16

Wolfram Syndrome UK
Notes to the Financial Statements for the Year Ended 29 February 2024
3 Income from donAtlon$ and legacles
Unrestrlcted
funds
General
Re$trlcted
funds
Tolal
2024
Tot41
2023
Donations and legacies..
Donations from individuals
Grants, includin8 capital Branls.
Grants from oiher charities
Regular giving and capiial
donations
9.202
16,215
25,417
27,730
2,047
8,177
10,224
5.246
3,859
3,859
501
33,477
4 Jncome from other trAdlng a¢dvRde$
Unr¢strlcted
lunds
General
Restrlcted
funds
Total
funds
Total
2023
Tradirn8 income:
Sales of goods and services
Other trading in¢ume
Events income.
Other evenls incvme
279
279
50,662
330
48,400
50,662
45,458
45.458
25,1190
50,662
Page 17

Wolfram Syndrome UK
Notes to the Financial Statements for the Year Ended 29 February 2024
5 Investment Income
Unrestricted
funds
General
Tot81
2024
Tot81
2023
Inteiest receivable and similar income;
Interest receivable on bank deposits
500
500
19
6 Expenditure on raising funds
) Costs of generatlng doDatlon$ and legAele8
Unrestrlcted
funds
Gener81
Total
2024
Totgl
2023
Note
Marketing and publicity
Allocated support costs
3,1611
8,007
3,16
.007
166
11,175
11,175
b) C05t8 of tradlng aetlvllles
UDr¢strlcted
fund5
GeLer41
Total
2024
Total
2023
Note
Costs of goods sold
D¢precialion, arnortisalion and other similar
costs
4,225
4,225
2,346
81
181
361
Other direct costg of activities for generating
funds
32,897
37.303
20,872
?3.579
Puge 18

Wolfram Syndrome UK
Notes to the Financial Statements for the Year Ended 29 February 2024
7 Expenditur¢ on ¢harltAble actlvltles
Vnrestrfieted
funds
General
Restrlcted
funds
Totsl
2024
Total
2023
Note
Support for WS
¢OTnmunity
Conference Costs
Allocatod support
costs
L85
60,766
(1331
60.951
(133)
22,419
5.475
531
Govemance cosis
17
4,7J7
Page 19

Wolfram Syndrome UK
Notes to the Financial Statements for the Year Ended 29 February 2024
8 Analysls of governance and $upport costs
Ralslng fund5 e%penditure
Support costs alloe&ted to rAlslng fund5
Administration
eosts
Total
2014
Total
2023
Costs of generating donations and1¢8acies
1.590
Governince costs
Unrestrlcted
funds
General
Restrlcted
funds
Total
2024
TotAI
2023
Indepcndenl examiner fees
Examination of the financial
sratemenls
Professional fees
Other governance costs
1.344
13
3.195
lJ44
13
3.212
1,452
6,457
3.242
17
4.552
17
4.569
9 Iyet Ineomlngloutgolng resoureej
Net incoming resources for the year include..
2024
2023
Depreciation of fixed assets
181
361
10 Trustees remuner&lioD and expenses
During th¢ year the charity madc the following transactions with trustees..
Mr P Lynch
£Nil {2023'. £1,131) of expenses were reimbursed to Mr P Lynch during the year.
Page 20

Wolfram Syndrome UK
Notes to the Financial Statements for the Year Ended 29 February 2024
11 St&ff costs
The aggregate payroll costs were as follows..
2024
2023
Staff costs durlng the year were:
Wages and salari¢s
Pension costs
66,785
37.561
1,070
68.789
38,631
The monthly average number of persons (including senior management I leadership teatn) employed by the
chanty during the year expressed as full time equivalents was as follows,.
2024
2023
Full liiiie einployees
Contributions to the employee pension %¢heme.% for the year lotalled £2.1104 (2023 - £1,070).
No employee received emoluments of more than £60,000 durin8 Ihe year.
12 Independent examlner's remunerltlon
2024
Z023
Other fees to examlners
The examining of the accounts of the charity
Page21

WolfrAm Syndrome UK
Notes to the Flnancial Statements for the Year Ended 29 February 2024
13 Taxatlon
The charity is a registered charity and is Ih¢r¢fore exempt from taxation.
14 Tanglble fixed asset$
Furnlture and
equlpmeDt
Total
Cost
At l Nlarch 2023
Additions
4.457
275
4.457
275
Al 29 February 2024
Depreclation
Ai l March 2023
Charge for the year
4,732
4.732
4.310
4.310
Ai 29 February 2U24
4.491
Net book value
Al 29 February 2024
At 28 February 2023
241
241
147
147
IS Stoek
2024
2023
Stocks
425
837
16 Debtors
2024
2023
Trade debtors
Prepayrnenls
866
244
427
244
1,110
671
Page 22

Wolfram Syndrome UK
Notes to the Financial Statements for the Year Ended 29 February 2024
17 Credltors; amounts falling due wlihin one year
2024
2023
Trad¢ creditors
Other taxation alld social security
Accruals
41
59
(222)
1.392
?.415
2,566
18 Fund$
Balanet at
29 February
2024
Balance at I
Mareh 2023
Ineomlng
resource$
Resources
exptnded
Transfers
UTrrestrlcted fund$
General
General Funds
26,939
61,345
(53,215)
(2,500)
32,569
Designated
Resear¢h Fund
Total unrestrlcted funds
Restrlcted thnds
Wolfram Syndrome
Coofcrence
Researeh Fund
Breaking Dow) Barriers
The National Lottery
Community Fund - EWB
Albert Hunt TNst
BCH NHS Conlra¢t
InlemL)linnal Symposium
TREA Twolfram
5.t490
20,491
10
6,006
34.4AII
16,215
12,?18)
(108)
3,584
496
33,672
2.219
13,584)
(496)
(41,465)
(12,896)
50,662
8.177
42,869
2,500
10,094
Total restricted funds
76,554
75,054
60,651
2.5￿)
Tot81 funds
108,493
136,399
(113,866)
131026
Page 23

Wolfram Syndrome UK
Notes to the Financial Statements for the Year Ended 29 February 2024
B814nce at
28 February
2023
Balanee at I
March 2022
Incomin%
resources
Re50ur¢¢s
expended
Transfers
Unrestrfcted funds
General
General Futids
l2,443
49,572
(35,076)
26,939
Deslgnaled
Wolfram Syndromc
Conference
Research Fund
43
5.193
(43)
193
5.236
2Jfi
5.(KiO
Totil unrestrlcted funds
17.679
49572
31.939
Restrlcted
Wolfrani Syndrome
Conference
Re.4earch Fund
Breaking Dowm Barricrs
Thc National Lottery
Community Fund - CWB
The Nalional Lottery
ComTnunity Fund - EWB
Albcrt Hunt Tn￿t
BCH NHS Contract
Inlemaiion81 Symposium
TREATWolfrnm
11,365
25,260
1,592
15,475)
5,890
20,491
108
5,325
(10,094)
{1,484)
(66)
8.325
(4,741)
(504)
(14,728)
{2,61Y))
3.584
496
33,672
2,219
10,094
48,400
4,819
10,094
Total restrlcted funds
47,(￿8
29,598
Total fund$
65,287
1011,116
64.91ts
108.493
Page 24

Wolfram Syndrome UK
1¥4otes to the Financial Statements for the Year Ended 29 February 2024
The specific purposes for which the thnds are to be applied are as follows..
Wolfram Syndrome Conference
Incom¢ and cosis towards the annual conferences.
Research Fund - Funds rdised, donated or designated by WSUK to 4S51St in resear¢h of the syndrome.
Breaking Barryets
BDB Gront from Sylvia Adams Twst for BAME families projcct lyear l),
BDB Year 2.. A second BDB grani from Sylvia Adams Trnst for a project with ihe WS community across
different cultures.
The National Lottery Community Fiind (TNLCF) Awards For All.. Cai'er5 Wellbeing Pilot Projecl for WS
carers.
The National Lottery Community Fund (TNLCF) Awards For All., Emotional W¢llbein8 Proje¢l for WS
atyecled adults.
Albert Hunt Trust for support of WS affected adults.
BCH NHS Contract . Provision of WS related support services to Binningham Children's Hospital,
IniemationAI Symposium - Funds received tOWBrds ihe cost of holdin8 an intemaiional resear¢hers symposium.
TREA Twolfrarn - Funds raised. donated or designat￿ by WSUK to assist families/individua15 in covering any
Ir?v¢l/accommod&tion costs that Are incurred by ihem for taking part in the 3 year TREATWolfram clinical trial
which started recruitment in January 2019, with regular visiLS lo Birniiiigham Children's Hospital & Queen
EIi7Abeth Hospitsl Bimiingham.
Page 25

Wolfram Syndrome UK
Notes to the Flnancial Statement5 for the Year Ended 29 February 2024
19 Analysls of net 4%sets between fund$
Unrestrlcted
funds
General
Total funds 4t
29 February
2024
Restricted
funds
Tangible fixed assets
Current assels
cU￿ent liabilities
241
39.893
241
133,351
2.215
93,458
Totsl nei assets
131,377
UThre5trlcted
funds
Gener*1
Total funds at
28 February
2023
Restrieted
funds
Tan¥ible fixed assets
CLI￿ent assets
Current liabilities
147
38,910
147
109,574
1230)
70,664
Total net assets
108491
20 Analysls of net funds
A129
Febru#ry
2Q24
At l March
2023
Flnlnclng c45h
flows
Cash at bank and in hand
108.066
131,816
108 066
23.750
131,816
21 Related party tr4D$gCtlons
During the ycar the charity made the following relaied party Iransa¢tions:
Troey Lyneh
(Related party of Trust¢¢ Paul Lynch)
Gross wages - £17,353 12023.. £14,658). At the balance sheet date the amount due tolfrom from Tracy Lynch
was £Nil (2023-£1,131).
Glna 15herwood
(Related paty of Truste¢ John Ishcnvood)
Gross wages - £20,134 (2023.. £9,100)
Paym¢nt to Gem Consult for professional 5crvices. including fundraising and other activities
£6,307.50). At the balance 5heei date the amount due to/from Gina Isherwood was £Nil (2023 £Nil).
£0 (2023:
Page 26