REGISTERED COMPANY NUMBER: 112900107 (England and Wales)
REGISTERED CHARITY ￿ UMBER: 1039549
THE TUBEROUS SCLEROSIS ASSOCIATION
Unaudited Financial Statements for Ihe Year Ended 31 December 2023
Tudor JohJ] Limited
Nightin2ale House
4648 East Street
Epsom
KT17 IHQ

THE TUBEROUS SCLEROSIS ASSOCIATION
Contents of the Financial Statements
for the jear ended 31 December 2023
Page
Report of the Trustees
I to 16
Independent Examiner's Report
17
ststernent of Finall¢ial Activities
18
Balance Sh¢et
19
Notes to the Financial Statements
20 to 28
Detailed Statement of Financial Aelivities
29 to 30

THE TUBEROUS SCLEROSIS ASSOCIATIOli (REGISTERED NUMBER: 02900107)
Report of the Trustees
for the year ended 31 December 2023
The trustees who are also directors of the charity for the purposes of the Companies Act 2006, present their report with
the fmancial statem¢nts of the charity for the year ended 31 Decetllber ?0?3. The trustees have adopted the provisions
of Accounting and Reporttng by Charities: Statement of Recomtnended Practice applicable to charities preparing their
accounts in accord￿¢¢ with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102)
(effective l January 2019).
Page I

THE TUBEROUS SCLEROSIS ASSOCIATION (REGISTERED NUMBER: 02900107)
Report of the Tru5tee5
for the Year ended 31 December 2023
ORIECTIVES AND ACTIVITIES
Objectives and aims, including public benefit
The Tuberous Sclerosis Association (TSA) was launched in 1977 with a membership of 50 families and funds of just
£25. We have orown from a round robin support letter to a professional organisation providing support to families
affected by Tuberous Sclerosis Complex (TSC) acros5 the UK.
Tuberous Sclerosis Complex (TSC) is a rare genetic condition that causes growths to develop in different org&ns
around the body, such as the brain. luntss. kidneys, eyes. heart and skin. These growths are sometimes referred to as
beni.trn {non-canc¢rous) tumours. When they cause problems, it is mainly because of their size and where they are
growing in the body.
I"SC in number5:
Every month around l O babies are born with TSC in the UK
801 of people with TSC have epilepsy which iypically starts in infancy and is difficult to control using
epilepsy medication
5 out of every l O people with TSC have learning disabilities with around 3 in l O people have profound learning
disabilities and need life-lons support from their families or live Tn residential
90Q/ty of people livino with TSC develop TSC-Associaled Neuropsvchiatric Disorders (TAND). This includes
autism spectrum disorder. attention deficit hyperactivity disorder, behaviours that can challenge, depression.
anxiety and sleep disorders
Every new di4(mosis of TSC marks the start of an unexpected j(HJtney for the individual and family affected. The
TSA is here to provide support on every step of the way.
The Trnstees confTh that they have complied with their duty, under the Charitie5 Act 2011, to have regard to the
Charity Commission's published public benefit guidelines in deter￿[ning the activities undertaken by the Association.
SUMMAR Y OF AhThUAL PERFORTrIATr4CE: 2023
The TSA has continued to deliver on its strdtegic priorities:
Siipporttng the TSC co￿[￿unity in all aspects of the condition
Being at the forefront of the TSC research a(wenda
Reducin(y the charity's OPeTatTno deficit
ORIECTtVES AND ACTivfriES
ose and StTate
The TSA has 3 charitable objectives:
- Support individuals affected by TSC. together with their families or carers
- EncouraLTre and support research into the causes and rllanagemcnt of TSC
- Provide educatio￿ publiclty and inforn]atioll io promote awareness of problems ca￿sed by TSC
Tlie TSA is approaching the end of its 5 year Strdtegy (2019-2)) which sets out a clear ￿lsiOn of a world where TSC
and its effects aTe conquered and continues the charity s mi55ion to provide help for today and a cure for tomorrow.
Durin(r this strategy we plan to:
REACH inore people - sifjnificantly increase the number of people beinTr supported by the TSA by 2023
Drive more REseArCH stimulate at least the same amount of invesknent in TSC research durino 2019-20? j as
was invested by the TSA over the last five years
- Continue to balance the TSA'S fmances - having invested in resc￿ch in Tecent years. we need to reduce expenditure
and grow iJ]covne so that the chanty is sustainable in the lono_term
Page 2

THE TUBEROUS SCLEROSIS ASSOCIATION (REGISTERED NUMBER: 02900107)
Report of the Trustees
for the year ended 31 December 2023
The Aims, Objectives. Enablers and Values that deliver the strategy
Our strategic aims are to:
- Positively impact on the health and wellbeing of people living with TSC. families and carers
- Lead Tesearch into tools, technologies and treatments which eliminate the effects of TSC
- Lead innovation in the integration of medical alld social ca
Our strategic ob'ectives (how we will do it) are to:
- Deliver quality, easily accessible and timely inforniation about TSC and livincr with the condition
- Provide opportuntties for people with TSC and their families to connect, SUPPOrt and learn together
- Build the knowledge and expertise of professionaIs working with people with ISC
- Drive the research atsenda to improve outcomes and quality of life for people with TSC
- Expand our understanding of the condition to accelerate diagnosis, intervention and development of new treatments
- Disseminate and use evidence to infiuence NIIS policy and practice
- Campaign for better access to treatsnents and care from the NHS
- Support the development of centres of excellence for supportino
people with TSC and their families
- PiloL then roll out. innovative approaches to whole perso￿ family and support
Our strdtegic enablers that make it possible are:
- Effective teamwork by staff working together to achieve a shared vision
- High-quality. integrated fmancial m2nagernent
- Digital transfonnation and smart working to reach more people
- An ente￿riSing approach to inconje generation to drive moTe research
- Having values that are inclusive, ambiiious and effective
2023 Business Plan
The f￿st four years of our 2019-202J Strategy saw the TSA significantly reduce expenditure to address the ¢k￿lty'S
structural deficiL while simultaneously improving the quality of our services and increasing our reach in the TSC
communty.
As a result of the cost-of-living Crisis and working with a smaller team than originally envisatsed at the start of the
current strategy period and be}ond. we continued to focus our resource on a smaller number of strategic objectives in
2023 to help the TSA cornmuDity and the professiona15 who work with them. These were:
Ensuring that the TSA is on solid ground across all teams with a i'iew to long-term stability-
Recruit a new fimthaising team (Head of Fundraisinu and Fundratsing Officer) and establish a clear fundraising
strategy across all incorne streams for the immediate and long-term
ReC￿lt new hires across TSA teams, PTovidmg stronoer fi)undations and r¢silien¢¢ for a bealthier and happier
charity that also mitigates risk of future exits
Ensure that the TSA'S internal practices and strnctures are up-to-date and e￿Y to follow. including access to all
banking and other PTo¢edures
Providing access to good qu21itTr, accessible and timely informatio
Develop furth¢r support ￿￿terialS and resources for the TSC community. Namely, an improved 'TSA Welcome
Pack, to make the first steps of a TSC diagnosis easier
Continue to build and improve the TSA webslte and social media channels. working to achieve the Patient
Inforniation Forum accreditation &s a kite-mark of seryice qualtty
Undergo an audit of the TSA'S website. updating and removing content &$ needed to better represent the
digital-f￿st TSA and TSC cornrnunity
P￿0e 3

THE TUBEROUS SCLEROSIS ASSOCIATION (REGisfERED IYUMBER: 02900107)
Report of the Trustees
for the y'ear ended 31 December 2023
Providing the opportunity for people with TSC to conneeL support and learn together
Explore opportunities for virtual peer-to-peer supwrt. such as in the forni of virttLal events, one-to-one
discussions or other forums
Deliver a slimmed-down Bio Day which had to be px)Styoned from November 2022 to May 2023 due to rnil
strikes. Big Day will allow the TSC commullily to connect face-to-face, with thc focus on networkino and feeling
like part of a community
Deliver a fac¢-to-face Outlook event, Connecti￿￿ adults mildly affected by TSC
Continue to deliver ambitious calendaT of virtual events, ensuring that
eographical location is not a barrier to the
Capacity-build the knowledge and espertise of professionats working with people with TSC
Launch the NHS England-partnered TSC Rare Disease Collaborative Network (RDCN). If application
unsuccessful, work on appeal process to ensure the right decision is made
Further solidify r¢lationship with NHS TSC clinicians thTouJo regular gjucational con]muni¢ations focused on
improving dia￿0$15, car¢ and rnanagement of TSC
- Support the NHS TSC Clinics Network through a Tange of activities including a virtual annual NHS TSC Clinics
Education Day
Drsving the research agenda With the aim of improving outcomes and quality ofiife for people living with TSC
Work with Epilepsy Research UK on the successful application to the joint_funded 'EMerg1￿(F Leader. award
Support review of the UK guideline on identifying and managing TSC, so it is consistent with updated
international guidelines and incory)OTates UK guidance on new treatments
Continue to grow TSA'S research volunteer ThetWo￿ to drive patienL-centrir re5¢arch and increase investment in
TSA research throuJts paticnt and public involvement and en
-agement
Campaigning for better aecess to treatments 2nd care
Continue to work with pharniaceutical partners and foster strong relationships in anticipation of pipeline product
launches (i.e.. topical sirolimus treatment for facial angiofibrornas)
Should NICE reject Epidyolex (cannabidiol) funding application for Tsc-related epilepsy after second appraisal:
Work with key stakeholdeTS- includinty the TSC community- to appeal to NICE in order to tset the decision that
the TSC community deserve
Should NICE accept Epilyolex (cannabidiol) fundin"
application for Tsc-related epilepsy.. Work with
stakeholders to ensure that access to medicine and awarelless of its availability is done efficiently
Stratettic enablers
We will focus on=
High-quality, Integrated financial management
TSA leadership to continue to develop fmancial manaoement skills. improving confidence and capabilities that
will benefit the charity
Digital transformation and smart working to reach more people
Further encourage greater use of dioital plarfonns across community.. further reducincw costs and reSoU￿l￿g
Continue our journey" to wOrki￿(r smarter, with more automarion and streamlinin(r across outputs
F￿t our IT provider out to tender to see if it is possible to make savinJLF in what has become a more competitive
market due to the increase in home-workers follo￿.ing covid
Audit the charity's current IT infrastructure and explore alternative options for Losl-saving including a potential
move from remote desktop set-up to a cloud based file Sh￿in0 sjstem
¥ plarfornis and neN'orks. m&ximisinq return on investsnent and resourcing
Embrace third-paty fundraisints
An enterprising approach to income generation to drive rnore research
Conttnue to develop opportunifies from alternative source& includino sponsorship by phannaceutical companies
Have a ￿eater focus on trusts and foundations opening new opportunities for income across small, medium and
large applicatiOTIS
Reconnect with medium and major donois, encouraoing ongoing givi￿0 with focused campaign
Audrt of community fimdraising activiiies to understand return on invesknent aoainst hiuh level of resourcing..
such as the NHS TSC Clinic5 Virtual Challenoe
Miorate ro a more etTicient Custotller Relationship Man￿￿eMent (CRM) system. allowincr us to work more
efficiently and in a way that is tnore impacrful

THE TUBEROUS SCLEROStS ASSOCIATION OiEGISTERED NUMBER: 02900107)
Report of the Trustees
for th¢ yvar ended 31 December ?023
STRATEGIC REPORT
Despite structural changes in the team and the challenges of the cost-of-living crisis impacting the charity's income
generatlon, tbe TSA'S Trnstees and staff continue to be ambitious about wbat we want to achieve for individuals living
with TSC and their farnilies. We are detennined that the current fmancial climate will not stop us being here for anyone
affected by TSC.
Our mission is to provide help for today and a cure for tOmo￿ow.
The Trustee5 monitor perfornance against tlwee headline illdicatots and a broadeT set of key perforniance indicators to
detennine the progress of our current 5-year strategy.
Reachin
more
It is estimated that there are between 3,700 to I 1,000 people living with TEC Tn the UK. In 2018 there were 3,394
people in contact with the charity including people living with TSC. their families, carers and friends. tn 2023, 4,536
people made up of those living with TSC, their families carers and friends were in CODta¢t with the charty. This was 30
per cent kngher than at the start of the strdt¢gy.
The TSA Support Line continued to provide vital support and advice by telephone and ernail to people living with TSC
across the UK. 270 people contacted the TSA Support Line for support in 2023. 22,000 user5 Visited our website for
inforniation in 2023. 3,040 people are subscribed w iec¢ive email updates from us.
Drivin
more research
The TSA continued to drive the research ￿trellaa by jointly funding research and Supporting researchers.
2023 saw the start of new study jointly funded with Epilepsy Research Institute. The FeUows]]ip Award is a major
opportunity to pusb Tsc-related epilepsy research ￿rther. widenino its scope and givin(F
Dr Atnanda Almacella
Barbanoj (University College London) the opporlunity to become a leader in TSC research. Dt Barbanoj's research will
allow us to better understand the relationship between TSC and epilepsy. The hope is that this will then rnean that new
ways to treat and manage Tsc-related eptlepsy will be unk)cked, such &s medicines and therapies. This could Ellean that
people have fewer and less severe seizures. reducing the impact of TSC on everyday life. This is an exciting
Oppo￿nIty for Tsc-related epilepsy research to e.¥tend beyond the 'walls' of TSC, into researchers and experts m.ho
may not have otherwise encountered or focused on the condition previously.
BaE2n¢in
th¢ books
Enabling 2nd funding world-leading res&8reh into the diagnosis. treaknent and management of TSC will always be a
central pillar of the TSA. However, the Trustees made the difficult decision that for the TSA to be sustsinable, it must
raise sufficient funds to ensure that the charity is making a surplu5 before any further research commitments are made.
All existing res¢arch commitments continue to be meL and the charity continues to have an impDrtant role in TSC
research more broadly.
The T[L￿teeS, goal is to retain our reserves at a sensible level to give us the best possible opportunity to grow the charity
frotn 2024 and deliver the ambitions s¢t out in the next strategy period.

THE TUBEROUS SCLEROSIS ASSOCIATION (REGISTERED NUMBER: 02900107)
Report of the Truslees
for the year ended 31 December 2023
OBJECTIVES AND ACTIVITIES
PERFORMANCE:
Sli
ort and informatton evellts alld communications
The TSA rematns focused on flexibly Teachillg more people impacted by TSC, respectin(v geographical and cultural
diversity.
We continue to provide the TSA Support Line to everyone ID th¢ TSC community. This enables people across the UK
to contact our small support team confidentiall}' b). telephone: ¢haL etnail and post (9am to 5pm on Monday to Friday
each week). We were contacted by arourLd 25 people each mODth in 202) ￿kIng for support, inforniation or a listening
ear. Reasons for contacting the TSA Support Line varted, from new diwoses, specific questions about medicines or
treatments, or just wantiniy to talk to someone with a listening ear.
We continued to provide proactive infOrn￿ll0n and resources through our other various challenges. This includes our
website
s.'l/tuberous-5clerosis.or
tK)pular social media cha[￿e]$, community magazine (cajled Scan), email
newsletter updates and our ViTtual and face-to-face events. We continually evolve all inforniation and support materials
that we offer, ensuring that remains upto-date and r¢levant.
2023 marked the launch of the TSA'S professional trainFng courses - one for education professionals and one for social
care professionals. These COUTses are the first of their kiTJd anywhere in the world. pr()viding trainino to people
previously unfamiliar w'ith TSC across a range of tOPlC5 and areas. The training courses are fully certified for Continual
Protessional Development (CPD) poinls, meaning that professionals can use them &s part ot their required annual
training and development.
l J professionals signed up for the online traintno COUTSes upon their launch during 202J. Feedback for the course was
ovenYhelmÉn¥(rly positive and thankful. The cost of purchasino access to the training for every Professional means that
the training course5 were self-funded durinrj 2023.
Throughout 202), we oroanised reoular vtrtual events focused on the concerns that people shared on the TSA Support
Line. These events were recorded and shared online so the)1 ￿'ere accessible for families with carin(% responsibilities.
Virtual event5 in 20?"
? included=
Events focused on health &spects of TSC. such as TSC and epilepsy. TSC and pregnancy and the ketogenic diet
Practical advice, such as Wills and ￿tUre planning, Edllcarion Health and Care plans, and TSC r¢s¢arch
Special clinic meetings focused on specific NHS TSC Clinics
Across 202). there were 25) people who registered for our virtual events.
202J also saw the remrn of our popular face-to-face events. Outlook is our group for adults mildly affected by TSC. We
welcomed 35 '0utlookers' to Outlook 202) which took place in Leicester. Bio Day, our biggest event of the year where
everyone in the TSC community is invited. took place in Manchesler with 90 people in attendance. We look forward to
hosting these events in 2024.
202) saw an unprecedented demand for the TSA Support Fund. The fund provides Small discretionary grants to those in
the TSC community facing fmancial crisis. The TSA Support Fund is available to people affected by TSC who are in
benefit of benefits. The fund provides support for a ranoe of thinos, such as household iiems. respite leave or emei(Tency
repairs. We awarded £9,600 in ￿ants from the TSA Support Fund to )) individuals and families.
In January 2023, NHS England accepted our application for the NHS TSC Clinic Network to be foTmally recognised as
a Rare Disease Collaborative NetWOTk (RDCN). This means thai the network- and all clinics who were part of the
application will be able to have a tnuch stronoer role and capabiliry tn: (i) Improving understandin(F and awareness of
TSC in the NHS; (li) standardisino clinical and care pathways. and (iii) vnaintaininu best practice and education
amon(TsI TSC spL'LialLbls and non-specialists. Providers iii the TSC RDCh' vi.ill also be i'ecognised as leaders in TSC
diatsnosis, care and management. In addition, it 15 hoped that all clinics part of the netyyork ma). in the future be possibly
eligible for ￿tUre fundin(v opponunities, if ever available.

THE TUBEROUS SCLEROSIS ASSOCIATION (REGISTERED NUMBER: 02900107)
Report of the Trustees
for the year ended 31 December 2023
Following approval by TrIHS England of the TSC RSCN, the TSA hosted its first NHS TSC Clinic Lead meeting of the
yeaT in May 2023, followed by a face-t(Fface event for clinic leads in October. The TSA hosted further hosted two vital
meetings virtuall)'- TSC RDCTrI Nurse Specialists Mi eeting, fitst TSC clinical networking event focused exclusively on
TSC specialist nurses", and the annuaI NHS TSC Clinics Education Meeting.
Two issues of tbe TSA'S popular community magazine, Scan. were published in 2023. The rnagazine is an important
element of the TSA'S support and inforniation, providino an update to households on key TSC news and TSA projects.
Scan was delivered to around 2.000 households ill 2023
Research and advocac
Our research team is coulmitted to driving more research to give people living with TSC and their families hope for the
ture. The TSA is the onty UK charity dedicated to supporting TSC research, with an in-year research grant
ommittnent in 2023 of £13268. The charity's Trnstees remain deterniined to honour the research grant commitment5
that we bave made and decided that the Designated Endowment Fund would be ￿Sed to cover the cost of our ongoing
research grants pro￿amMe.
The TSA'S research portfolio of previously committed grdnts in 2023 consists of 5 live grants (2 of which are jointly
funded). Our portfolio of ongoing projects is wortb £43.072.14.
Live grants table 2023
Reference
2018-S02
Dunlop
Investi
ator
Dr Elaine
Dunlop
Institution
Cardiff
University
Title and
ur ose of
rant
Characterising the role of
exosomes in TSC
We know thaL TSC cysts surround
and hijack healthy cells. ill turn
helping the cysts grow. This project
plans to collaborate with world
leading TSC experts to help better
understand ex￿tlY how TSC cysts
ommunicate with healthy cells. It IS
hoped that this research couEd help to
reveal new ￿'ayS of preventing TSC
cysts from growing, thereby helping
to develop better strategie5 for
treatin
and mana
TSC.
Understanding the limits of
everolijnus and rapamycin
This project is investigating the limits
of everolimus alld rnpamycin,
specifically. why these trealments are
not l OOO/o effective and why not all
TSC tumours respond to treatment
with them. The team are ¢￿TrentlY
exatrnining how TSC tumour cells in
the lab respond to a series of new
dru J in clinical development and will
compare the effects with existing
treatments. It is hoped that this
research NTrill help to find better and
moTe effective treatments for TSC
tients.
Co-funder
2018-S04 Tee
Professor
Andrew Tee
Cardiff
University

THE TUBEROUS SCLEROStS ASSOCIATION (REGISTERED NUMBER: 02900107)
Report of the Trustee5
for tbe year ended 31 D¢￿mber 2023
2019-FOI Tye
Dr Charlotte
Tye
Kings College
London
Designing a protocol to
measure the developmental
trajectory of infants with
Tuberous Sclerosis
The EDITS study team have
developed a horne-ba8ed assessment
to better monitor and understand
social and non-social attention in
toddlers with TSC. ThÈs early
intervention solution already indicated
a dramatic improvement in social
behaviour linked to autism spectrum
disorder. The EDITS sttEdy is ongoing
and aims to pave the way for the
design of more early interventions to
improve the long-terni quality of life
for
atients NTrith TSC.
A model of cell invasion in
TSC-LAM
2019-POI
Dunlop
Dr Elaine
Dunlop
Cardily
University
US Ministy
of Defence
One of the current priorities in TSC
reseaTch is to develop a model of the
huTnan rirculatory system usin
hun]an cells, so that scientists can
study LAM in more detsil. LAM (or
'lytllphantrioleiomyomatosis') is a
condition affectino around 35400/
females who live with TSC. LAM is
caused b}, TSC cells movincv from
different parts of the bi)dy to the
lungs, causinoty cysts. This new project
aims to create a LAM model_ If the
research is successful, it will give
scientists a better understandino of
wh). TSC LAM happens and why
son]e cells invade the lungs whilst
others do not.
Better understanding the
accessibility" of mental health
seTh'iees for children and
)ounu people Mith TSC
This project aims to develop an
undeTStandintr of appropriate and
effective ways for children and young
people with TSC to access available
mental health services and
ps}'cholo(vical support in the UK. This
Tesearch hopes to demonstrate a clear
benefit of providino therapies to
children and young people with TSC
who are experienciTJLT
psTr'chologica
or emolional distres5.
2019-P02
Amin
Dr Sam Amin
and Dr Ingram
Wright
Unive￿Ity of
Bristol
Anonymous
major donor
Page 8

THE TUBEROUS SCLEROSIS ASSOCIATION (REGISTERED NUMBER: 02900107)
Report of the Trustees
for the year ended 31 December 2023
TSC Research Volunteer Network
In 2023, 7 new Voluntee￿ signed up to be a part of the TSC Research Volunteer Network - the TSA'S patient and
public Rnvolvement and engagement programme. Establisbed in ?021: the netw'ork aims to ¢n￿Urage and empower
people living with TSC and their farnilies to help shape the future of TSC research. The network now h&9 a total of 39
volunteers, including individuals with TSC. parents and siblings.
Throuohout 2023, the TSA offered a range of opportunities to votunteers, inctuding:
Attending the All Party Parliamentary Group on Rare, Genetic and Undiwosed condition5 on issues such as
improving diagnosis, increasing awareness of rare conditions, access to treatments, healthcare and d¢livery
Helping TSC researchers apply for fimding from major fimders. This was done by reading summaries of the
researcher's work and participating in focus groups and I: I meetings with researchers, to ensure that the work
was impactful and meaning￿1 to people who are affected by TSC on a daily basis
Co-producing an upcoming stage 4 clinical trial
Acting as co-applicants on a large funding application
Participating in focus groups to refine the design of research prot(Kols. This w&g done for both clinical trials and
qualitative research studies
Giving feedback on draft inforn]ation leaflets wrrtten by a phamiaceutical company conducting a trial into TSC
medicine. The leallets will help explain the studies and how to be a part of them.
RevÈewing different leaflets and other doclllnents on behalf of TSC researcha3 working on TSC projects. This
helped ensure that content was written in a way that W&8 easy to understand for non-researchers
New treatmeDts for TSC
In early 2023, cannabidiol (brand name Epidyolexi&) was approved for use in Tsc-related epilepsy in England after
ongoing campaigning by the TSA. This means that people living with TSC across all UK nations now have access to
this new medicine, following similar ￿llPaign5 by the TSA to previously get access to the medicin¢ in other UK
nations. Decision-makers in England notcd the "real diffcrence" that the input of the TSA and the TSC community had
on the approval process.
Advocaey
We fornied successful allian¢es with other charities and w0￿ed with them on a range of activities and initiatives with
the common aim to raise the profile and importance of rare disease Th'ith parliamentarians and policy makers.
DuTing 2023 we continued to work closely witb colleLoues froffi the Specialised Healthcare Commissioning Alliance
(SHCA). We worked with the UK Rare Diseases Fonun and Genetic Alliance UK to raise awareness of the need to the
views of patients and famities when making decisions about treatments for rare diseases. We continued to be a mernber
of the Embracing Complexity Coalition to raise aWaren￿S of the need for joined up 5UPPOrt frotn health and social care
for complex conditions, and the Council for Disabled Children to improve access to services for children living with
TSC and their families. We attended the Westtninster All Party Parliamentary Group (APPG) on Rare, Genetic and
Undiagnosed conditions meeting on 16 May 2023 at the Houses of Parliament. The APPG focuses on Tssues such as
improving dtagnosis. increasing awareness of rare conditions. access to treatments. healthcare and delivery. The aim of
the meeting to speak to MPS about the C￿rdinatin0
Care rwrt that Genetic Alliance UK launched for Rare
Disease Day.
The TSA was invited to attend a roundtable. a co-created joint event beNeen UKRET and Genomics England (GEL),
facilitated by GEL'S Patient Engagement initiative to discuss the challenoes and experiences of charities like the TSA in
order to develop a meaniniyful conversation and roadmap to facilitate future worktng ￿LationshIp.
Page 9

THE TUBEROUS SCLEROSIS ASSOCJATION (REGISTERED NUMBER: 02900107)
Report of the Trustees
for the year ended 31 December 2023
Income Generation
The last few years have been unprecedented for many charities, with the TSA being no exception. UK businesses and
eharitie5 were optitnistic that 202i would be a year of repleniSF￿ent and returning to nonnality following the devasting
consequcnces of Covid-19. However, fresh cballenges through rdpidly rising inflation and a major cost of living crisis
put Strain on people which led to: Reduced Me2￿￿ for people to give io charities (either directl} through donations due to
personal fmancial challenges, or in fundraisino due to resourcing challentses of this). greateT number5 of applicativiis to
grant-making trusts and foundations. dilutints this important inC0￿e slream. and charities being unable to take greater
risks in ￿ndraIsing, reducing innovation. As a rare disease chaTity whose supporter base is smaller than others: the TSA
continued to feel these fmancial challenLFes even harder than most charities. Throu(rhout 2023 the TSA'S svnall and
dedicated teatn continued to work incredibl} hard to mitigate risks to the charity's income whilst minimising
expenditure.
We ar¢ extretnely grateful to the following ￿ant-making trusts and foundations for their crucFal unTestricted support
towards core costs throughout 2023: The Swann-morton Foundatioll (£1,000). Frazer Trust (£2,000), The Masterserve
Foundation (£6,411.63}, The Beechwood TTUSt (£2.000). AK&AJ Barnett Charitable Trust (£3,000), The Rest Harrow
Trust (£J,000).
In additio￿ we received unreitricted sponsorsbip from Jazz Pharniaceuticals (£22.500). Plusultra Pbarnia (£22,500) and
Marinus Pharmaceuticals (£8.000) which was a welcotne boost for the charity. This sponsorship was for different areiq
of our worl includints our work as secretariat on the NHS TSC Rare Disease Collaborative Network, our clinical events
and our con)rnunity events.
We would also like to thank the following t￿￿ts who have supported us with restricted funding to enable us ro continue
to develop specific areas of our work: The Meikle Foundation (£2.000) for our ongoing work in Scotland and The
Bailey Thomas Trust {£2,000) who generouslTr' conknbuted fund5 to assist with the TSC Together project. The Reed
Foundation (£1.500) and The Hobson Foundation (£4,000} who both kindly enabled to develop our supp)rt services
trainino modules. The Hospital SatLLrday Fund (£2,000) for generously contributed fiJn(Is to develop our mental
wellbeing research project, and Jeans for Genes (£4,000) for funds that enabled us to provide specialist creche services
at our Biu Day event.
The generosity of ant_makino trusts and foundations who supported us in 202) enabled us to coT]tinue to deliver our
vital services to the individuals and farnilies impacted by TSC.
Our sincere thanks go to our corporate supporters. Equi5tone Partners Europe Nvho continue to support us with a
enerous donatTon of £I,000, and who also allowed use of their London office Space for our TSA team away day. We
are also grateful for the continued SUPEK)rt of AubTe> Allen who generouslj dollated £ 1.000.
The TSA would like to that￿ the aTnuing people who took part in the 202) TCS London Marathon. We are in awe of
the dedication and time they all uave to train for such an iconic event, and we are thrilled that our team of runners raised
a fantastic £22,670.
The TSA would also like to thank lan Gould frir his generous donation of £9.142. raised duTing bis captaincy at
Nuneaton Golf Club durincv 2022.
Leavino a gift in a Will is a wonderfijl and powerful {yestU￿ that enables a person to 5UPPOrt the TSA even when they
are no longer here. For the family left behind. thej are able to take great comfort that their loved one has left behind a
legacy to be proud of. We would like to formall) record a huge thatd( you to everyone who supported us in this way.
In-memory donations alld letsacies raised £15,412 for the TSA this year.
Facebook donations have becoTne popular witb fundraisus as the), are an easy way to support the TSA and raise money
for milestone celebTations. such as birthdays and anni*ersaries. Throughout 202), this incoTne stream raised over £6,700
for the TSA.
In 202J. the TSA introduced the TSA Lottery. a new way for the TSC community to choose to oenerously give to the
charity. This income stream was setup in partnership svith Unity Lottery, and carefully ortsanised to enslire hicyh levels of
best practice and compliance as eipected with lottery products. In 2023. we had 60 players take part in the TSA
Lottery. with a total incom¢ raised of £1.253.
In Decembei 2023, the TSA'S Big Give Challenge rnised vital funds for our TSA Support Fund. The fund offers a
lifeline to individuals and families affected by TSC when the financial itnplicarions ol the condition become too Tnuch to
cany and they need financial assÈstance. We met our target to rdise £4,)50 for the TSA Support Fund thTOU(yh the Big
Glve ChTlStmas Challenge. Thi5 tar(yet was then doubled by the Big Give and the Reed Foundation, and with additional
supporter donations an overall total of £10.470 w&s raised.
Page 10

THE TUBEROUS SCLEROSIS ASSOCIATION (REGISTERED NUMBER: 02900107)
Report of the Trustees
for the year ended 31 December 2023
Every year, the TSA is proud to run a design competition 18 of our festive card design offering5. This year's winner
was Jasmine Ferguson, a little girl with TSC who submitted a wonderful Santa Clau5 design. The response to our 2023
Cbristmas cards was fantastic. raising £ I.740 for the TSA.
Despite the challenges so many people faced throughout 2023, our fi￿draiSerS dug deep and went above and beyond for
the TSA. We have a growing number of individuals who rdi5ed money by taking part in outdDor activities such fun nms.
other walkin(v aDd rlmning events and cycle rides. Other fundraisers enjoyed organising activities such as bingo nights
and gala dinners. We hope 2024 will provide a year of steady growth and stability within the TSA as we look to
sustainably generate income from more diverse and varied sources.
Investment lic
The Trustees have appointed investment managers to manage the Association's investment portfolio under a
discretionary investment ￿andate. Our investment objective is lo maximi5e total returns over the longer tcrm and to
provide a stable level of income to be generated with a medium level of risk. The level of risk applies to tbe portfolio as
a whole rather than to individual stocks.
In the year ended 31 December 2023. the total rettmi on the portfolio w&8 6.55P/o . Over the longer terni, our investment
managers have consistently outperforni¢d the benchmaTL Their perfornlance continues to be kept under review and
Trustees have an annual review meeting with them. The TTUStees have agreed a fornial investment policy reflecting the
investment objective stated above.
In Q3 2024 Trustees will review how much cash the charity is holdino and decide whether to reinvest the c&sh
remaining with our imvestment man￿￿er$. move it into an account to attracting a higher rnte of interes¢ or divide this
cash so that some can be reinvested and some can be moved into higher interest accounts.
FILYANCIAL REVIEW
Financial position
Graut making policy
Research grants are given by the TSA for pwposes directly concerned with fiffthering an understandino of TSC and its
treatment. The TSA is a member of the Association of Medical Research Charities (AMRC) and follows AMRC policy
in the conditions attached to awarding grants. All applications are peerreviewed.
Benevolent grant5 thr()ugh the TSA Support Fund are given to indivithia]s and families facing the fjnancial impact of
TSC. The TSA Support Fund provides a grant for a wide-range of items and experiences, such as household items,
respite care and travel costs to hospital visits. All applications for assistance are reviewed by a senior lead and gTaTbts
aM'aTded confidentially where deemed appropriate, based on the Association's guidelines. Trustees are eligible to appty
for such grants and are dealt with in th¢ same way as any other applicant.
Statement on reserves and review of financial position a5 at 31st l)ecember 2023
At the end of the year tbe TSA had to1￿ fi)nds of £888,294 consisting of:
Desionated funds of £686294 (further details as below) which are anticipated to be spent down in the coming
years
Non designated reserves of £202,000 representing 6 months of expendIt￿t excluding any research commitments
Designated Fund
The Designated Fund largely arises from a bequest in 1993 by the late Mr H l LeKh which does not forrn part of the
TSA'S normal reserves.
This Fund has been broadly treated as an "endowment" and invested with professional advisers to provide a resource
which supports the TSA in delivering its charÈtable objectives. In particular. it enables the Trustees to:
Fund or c(Ffund out of capital (an¢ if need be, at short llotice) major medical research projects which are
deterniined by the Trustees to be crucial for the treatment of TSC
Help fund the charitable activities from investment income. thereby helping to secure the futUTe of the charity and
provide continuing support to ￿tUre and current people affected by TSC

THE TUBEROUS SCLEROSIS ASSOCtATION (REGISTERED NUMBER: 02900107)
Report oflhe Trustees
for the year ellded 31 December 2023
In recent years, the balance on the DeSI￿ated Fund has reduced significantly as a ie5ult of both additional research
commitments and the Provision of additional services. the cost of which have not been covered by the incorne of the
Association.
The trustees are of the opinion that the Dgsi.onat¢d Funds should be retained to a minimum of £JOO.000. This allows the
TSA to Iiave at minimum sufficient ￿lld5 equivalent to around 6 months of outgoinos. as well as the means to institsate
major medical researcli projects, co-fund¢d by third parties. at Short notice if necessary.
Result for the
ear
The Association's totsl income for the year w&s £361,627 (2022 £284,640).
Our total investment gains were £22290 (2022 £87,971 loss).
Takillg into account the investment gainl(loss), the overall surplus for the year w&s £58￿83 (2022 deficit £162.)80).
Pre-investment sU￿]uS in 2023 was £36,293, wmpaTed to deficit of £74.409 in 2022. This improvement of £ 110.702
was primarily driven by increased income of £IOOk and a reduction in the costs of the OTganisation despite increased
levels of support grants in the year. This reflects the continued efforts of the leadership team and thetr management of
resources.
The Board of Trustees av)d Senior Management Team continue to make important steps towards the TSA bein
fll)ancially sustainable for the long-terni. Achievin(F a surplus in 2023 h&8 been a major milestone in this plan. The
Board and senior te3Jn will ensure that this sU￿lUS Ès manacFed ID the best and rnost sustainable way for the charity.
investing in infra5tructutg and other opportunities as Is sensible.
Page 12

THE TUBEROUS SCLEROSIS ASSOCIATION (REGISTERED NUMBER: 112900107)
Report of the Trustees
for the year ended 31 Deeember 2023
FUTURE PLANS
Strategic objectives
The 2024 Business Plan focu5es on the following activities.
Ensuring Ibat tbe TSA is OD solid ground acro&s all teams, with a view to long-tenn stability
Recruit a new Head of Fundraising and e￿ab}ISh a clear fimdraising strategy across all incotne streams for the
irnmediate and long-tenn
Ensure that the TSA'S internal practices and structures are up-t(Hlate and e&5y to follow, including access to all
banking and other procedure5
. R￿ruit to the TSA Board of Trustees, ensuring more diversity in tnt5tee skills and backgroun(L8
Providing access to good quality, accessible and timely information
Expand on physical and digita15UPPOrt materials. in particular those within the TSA Welcome Pack
Continue to build and improve TSA social media channels
Undergo an in-depth audit of the TSA website, following recommendation5 as part of this by the Patient
Itthrnmtion Forum following our r¢¢ent accreditation
Providing the opportunity for people with TSC to connec¢ support and lean] together
Explore opportllnities for an expanded TSA ambassador pro￿aMMe. where cornmunity members can Connect
with others in the community directly
Deliver Big Day, our biggest annual face-tfrface evenl so people can Connect face-tQ-face, with the focu5 being
on netwo￿]ng and feeling like part of a community
Deliver the face-to-face Outlook event, connecting adults mildly affected by TSC
Continue to deliver atnbitlous calendar of ViTti]al events, ensuring that geo.trrnphical location is not a ba￿le[ to
the TSA
Capaeity-build the knowledge and expertise of professionals working with people with TSC
Launch Continue to build and expalld the NHS TSC Rare Dise&se Collaborative Network (RDCN) through a
rdnge of activities including..
o NHS TSC Clinics Education Day (vIr￿al)
o NHS TSC Clinics Lead Mi eetino
(2 virti￿1, I face-to-face)
o NHS TSC Nurse Practitioner Meetintr (virtual)
o Virtual NHS TSC Multidisciplmary team meetitigs (x3, providing NHS staff the chance to discuss
challenging TSC patient cases virtuaIly
o NHS TSC Education Meeting (xl)
Further solidify relation%hip with NHS TSC clinicians throutrh regular cotnmunications roc￿Sed on improving
diagnosis. care and managcment of TSC.
Expand and improve upon the TSA'S professional TSC training modules for social and education professionals
Driving the research agenda with the aim of improving outcomes and quality of life for people living with TSC
• Run a seed-corn funding grdnt round to support the preliminary work necessary to build competitive proposals
for exÉernal funding that nay lead to new research initiatives
Canry out a refresh of the TSA Research StrateJ(r
Continue to Work with Epilepsy Research Institute UK on the successful application to the joint-fLmded
'Emergino Leader, award
Supw)rt Teview of the LTK clinical guidelines 01] identifying and manLoing TSC. so it is consistent with updated
international guideltnes and incorporates UK guidance on new trealments
Continue to ow the TSA'S research volunteer network to drive patient-centric research and increase investment
in TSA research throu J patient and public involvement and engatremeni
Continue to build relationsbips with potential partners and fithder5 to idelltify new opportunities for joint working
Paoe li

THE TUBEROUS SCLEROSIS ASSOCIA TION (REGISTERED NUMBER: 02900107)
Report of Ihe Trustees
ror the year ended 31 December 2023
Campaigning for better access to treatments and Care
Disseminate our and others, research findings internally, across ISC clinics and across TSC res¢a￿hers, to
drive improvements in TSC policy and practice
Continue to work with phannaceutical partners, fostering strong relationships in anticipation of pipeline product
launches (i.e. topical sirolimus for facial angiofibromas. ganaxolone for Tsc-related epilepsy. cannabidiol for
TAND)
Should NICE reject topical sirolimus fwidin¥lT application for Tsc-related facial angiofibromas: Work with Icey
stakeholders
Includi￿tt the TSC community - to appeal to NICE in order to get the decision that the TSC
community deserve
Should NICE accept topical sirolimus fuT]diDg application for Tsc-related facial angiofibromas: Work with key
stakeholders- including the TSC community- to ensure timely access to the treatment
Continue to efficiently work with stakeholders to ensure access to and raise awareness of new rnedicines, such as
carLnabidiol
Enablers
We will also invest time and ener¥ry in the strategic enablers that sec)Jre the lon47-terni futur¢ of th¢ charity includino:
High-quality. integrated financial management
TSA leadership to continue to develop financial management skills, Improvin￿ confidence and capabilities that
will benefit the charity Digital transforn￿t10n and smart workin¢F to reach more people
Work with our new IT provider to ensure smooth MI￿￿at10￿ to neiT¥ Sy5tem{s)
Coiitinue our journey to woikino smarter: wtth rnore aulomation and streamlining across outputs
Further encourage ￿eater use of di(Fital platfornis across community, further reducino costs and resourcino
An enterprisino approach to income generalion to drii'"e more research
Continue to generate income by deliverintr patient and public involvement activities across both academic and
industry research projects
Continue to develop opportunitTes from alternative sources. includinu sponsorship by pharniaceutical compai)ies
Have a J(r eater foGus on Irusts and foundations, opening new opportunities for income across small, medium and
large applications
Develop new appioaches to supporting major donors and potential major donors, encouraging legacies alld
working with corporates to generate income
Recrnit an experienced and confident Head of Fundraising to lead in the development of a new fundraising
strateuy and income generation broadly
Renew the TSA Board membership so we have a more diverse set of trustees with the right skills to deliver our
strategie aims and a Clear succession plan for senior truslee role5
In review of the CU￿ent TSA Board of Trustees, the Board agreed on th¢ need to refresh its membership following loss
and departures of several ke! individuals. A ke} focus 15 to re-introduce Board members with an in-depth professional
backoTround of income generation, fundrnising and governthce. This will help the Board to be re-invigorated and to
welcome fresh knowledue and impetus into the organisation.
OUT niission remains unchanged: to provide help for today and a cure for tomorrow.
Paoe 14

THE TUBEROUS SCLEROSIS ASSOCIATION (REGISTERED NUMBER: 02900107)
Report of the Trustees
for the year ended 31 December 2023
STRUCTURE, GOVERNANCE AND MANAGEMENT
structur￿ governance and management
Constitution
The Association was incorporated under the Companies Act 1985 as a company lin)ited by guaramtee, registered in
Entrland, No 02900107. and is governed by its Memorandum and Articles of Association. It is also reoister¢d as a
charity in England and Wales (No 1039549) and in Scotland (No SC042780).
Recruitment and appointment of new trustees
The Association considers the skill sets of existing trnstees, and prospective trustees are consideTed for appointment
based on the additional skills they can bring to the Association. Candidates arise as a Tesult of recruilment campaigns.
Organisational structure
A list of the Offices and other Trustees who served for all or part of the year, or who have been appointed before the
date of this report appears in Reference and administrative inforniation, below.
At each Annual General Meeting, one-third of the Trustees retire by choice or rotation. 2023 saw the sad loss of TSA
LifetÈme President and Trnstee, Tom Carter. Rajan Khullar stepped down fr()m the Board. The Board and members
elected and appointed Simon James as the Dew Tre&surer. Frdnces EImslie as tbe Chair and Sanjay Sethi a5 the
Vice-chair of the TSA.
Risk management
The Trustees meet as a Board four times each ye￿.
The Trustee's policies ensure that strdtegic planning and risk management processes become part of the operating
proce5s¢s of the Association. The TNstees have identified the major risks to which the Association is expose
dctemined the relevant stgnificance of those risks. and regularly review the adequacy of the systems that have been
esl(Ibliyhed to millgate those risks.
The Trustees's are also responsible for monitoring and overseeing the financial performance of the Association, wbich
includes:
Reviewing and approving a business plan and accompanying budoet each year;
Monitoring fmancial perforn]ance against the plar)ned budget througb quarterly fmance reports which are
scrutinised at each Board meeting:
Approving unbudtseted expenditure in line with th¢ Board-approved Kherne of delegation"
Regularly reviewing a three-yeaT foTcca5t to ensure that they are aware of the longer-terni fmancial outlook for the
charity,.
Overseeing the preparation of the statutory Annual Report and Accounts, ensuring compliance with accounting
standards the legal requirements.
Having responsibility for apkx)inting and overseeing the exteTnal finance provider, independ￿lt examination and
audit function.
Monitoring and reviewing the perforn)ance of the investment portfolio and reviewing and reappointing investment
managers as appropriate.
The Research Committee (Rescom) is an advisory committee to the Ass(Kiation'5 Board that is made up of a tninimurn
of five and a fftaximum of l O persons, including the c.hair and a Tninimum of two professional and two lay members.
Rescom meet5 to advise on strategic priorit15ation of funding for research grant rouT]d8. The TSA i5 a member of the
Association of Medical Research Charities. atkd we ar¢ committed to following the principles and practices of effective
grant manaoement including the AMRC'S five principles of peer review.
REFERENCE AND ADMINISTRATIVE DETAILS
Registered Company number
(rland and WaIes)
02900107 (En.
Regislered Charity number
1039549
Page 15

TH E TUBEROUS SCLEROSIS ASSOCIA TION (REGISTERED NUMBER: 029001117)
Report of the Trustees
lor the )'ear ended 31 December 2023
Registered office
Nightingale House
46-48 East Street
Epsom
SU￿eY
KT17 IHQ
Trllstees
T E Carter (resi.trned 25.11.23)
Ms A Cotton
Dr F V Elmslie
R Khullar (resigned 25.11 I))
Dr J C Kingswood
J Rogers
S Sethi
Rev M P Short
S J James (appointed 28.1123)
Company Secretsries
Dr P Takhar
L Lanttlands
Investment managers
Brewin Dolphin Limited, 12 Smithfield Street, London, EC IA 9BD
Banl£ers
CAF Bank Limited, 25 Kings Hill Avenuc: Kinos Hill. West Malling. Kent. ME19 4JQ
National Westminster Bank Plc, 67 Hioh Street: Statnes. TWI 8 4
Website
www.tuberous-sclerosL5.0
Independent Examiner
Tudor John Limited
NightinTrale House
4648 East Street
Epsom
Surrey
KT17 IHQ
Approved by order of the board of In￿ee5 on ...8 August 2024............... and Si￿ed on its behalf by:
F Elmslie- Trustee
Paoe 16

Independent Examinerls Report to the Trustw or
The Tuberous SeAerosis knsoeiation (Registered number: 02900107)
Independeut examiner's report to the trustees of The Tuberous Selerosis Association ('the Compally,)
I report to the charity tn￿tee$ on my examination of the acwunts of the C(xnpaDy for the year ended
3 1 December 2023.
Responsibilities and basis of report
As the charity's trl￿teeS of the Company (and also its directors for the purposes of company law) you are responsible for
the preparation of the accounts in accordance with the requirements of the Companies Act 2006 (Ihe 2006 Act,).
Havints satisfied myself that the accounts of the Company are not required to be audited under Part 16 of the 2006 Act
and are eligible for independenl examination, I report in reSp￿t of mv examination of your charity's accounts as carried
out under Section 145 of the Charities Act 2011 (*he 2011 Act). In carryincv out my examination I have followed the
Directions given by the Charity Commission under Section 145(5) (b) of the 2011 Act.
Independent eyaminer's statement
Sinc¢ your charity's gross incorne exceeded £250,01)O your examinu must be a rnembff of a listed body. l Can conf
that I am qualified to und¢rtak¢ the examination because l am a ￿ernber of the **ERROR- relevant professional body
must be completed**. which is one of the listed bodie
I have completed my examination. I confirni that no matters hav¢ come to my attention in connection with the
examination giving me cause to believe:
accountintr records were not kept in respect of the CoMp￿Y as required by Section 386 of the 2006 Act. or
the accounts do not accord with those records. or
the accounts do not comply with the accounting requirements of Section 396 of the 2006 Act other than any
requirement that the accounts give a true and fair view which is not a matter considered as part of an
independellt examination; or
the accounts have not been prepared in accordance with the methods and principles of the Statement of
Recommended Practice for accounttng and reporting by charities (applicable to charities preparing their
accounts in accordance with the Financial Reporting Strdndard applicable in the UK and Republic of Ireland
(FRS 102)).
I have no concerns and have come acTOSS no other matters in connection with the examination to which attention should
be drawn in this report in order to enable a proper Unde￿tanding of the accounts to be reached.
Hazel Day Bsc FCA DChA
Tudor John Limited
Ni(yhtingale House
4648 East Street
Epsonl
Surrey
KT17 IHQ
Date..
Page 17

THE TUBEROUS SCLEROSIS ASSOCIATION
Statement of Finaneial Aclivities
for the year ended 31 December 2023
2023
Total
funds
2022
Total
fl￿dS
Unrestricted
funds
Restricted
nds
Notes
INCOME ALYD ENDOWMEwfs FROM
Donations and legacies
250.553
90.547
J41,100
241,2i2
Charitable activities
Research
22,000
Other tradincr activities
Investment income
2,225
18,302
2,225
18,302
3,668
17.740
Total
271.080
90,547
361.627
284 640
EXPENDITURE ON
Raising funds
84.695
84,695
84,558
Charitable activities
Family Care & Support
Research
148,822
91.817
148,822
91,817
168,161
106,i30
Total
i25,)34
325,iJ4
359,049
Nel gain&'(losses) oil iiivestments
22,290
22,290
NET INCOME/(EXPENDITURE)
(i1,964)
90,547
(162,J80)
RECONCILIATION OF FUNDS
Total ftmds brought forward
829,711
829.711
992,091
TOTAL FUNDS CARRIED FORWARD
797,747
90.547
888 294
829,711
The notes forn) part of these financial ststrments
Paoe 18

THE TUBEROUS SCLEROSIS ASSOCIATION (REGISTERED NUMBER: 02900107)
Balance Sheet
31 December 2023
2023
Total
funds
2022
Total
funds
Unrestricted
funds
Restricted
fi￿dS
Notes
FIXED ASSETS
Investments
12
660,307
660,)07
642,707
CURRENT ASSETS
Debio
Cash at bank
13
22,873
156,592
22,873
247.139
3,385
270 842
90,547
179,465
90,547
270,012
274,227
CREDITORS
Amounts falling due within one year
14
(42,025)
(42.025)
(87,223)
IYET CURRENT ASSETS
227 987
187.004
TOTAL A&SETS LESS CURRENT
LIABILITIES
797,747
90,547
888,294
829,711
IYET ASSETS
797.747
90.547
888294
829711
FUNDS
Unrestricfrd funds
Restricted funds
15
797,747
90,547
829.71 I
TOTAL FUNDS
888.294
829.711
The Charitable cotnpany is entitled to exemption from audit under Section 477 of the Companies Act 2006 for the year
ended 31 December 2023.
The members have not required the company to obtain an audit ol its financial statements for the year ended
31 December 202J in accordance with Section 476 of the Companies Act 2006.
The trustees acknowledge their responsibilities for
(a)
ensuring that the charitable company keeps accounting records that comply with Sections 3 86 and 387 of the
Companies Act 2006 and
preparing financial statements whicb give a true and fair view of the state ofaffairs of the charitable company as
at the end of each fmancial year and of its surplus or deficit for each fmancial yeaT in accordance with the
requirements of Sections 394 and 395 and which othenvise comply with the requirements of the Companies Act
2006 relating to financial statements. so far as applicable to the cbarttable company.
Ib)
These fmancial statements have been prepared in accordanre with the provisions applicable to charitable companies
subject to the small companies regime.
The financial statements were approved by the Board of Trustees and authorised for i55ue on
2024................................ and were signed on its behalf by:
.15 August
The notes fomi part of these financial statements
Paoe 19

S James - Tntstee
The notes forni part of these financial statements

THE TUBEROUS SCLEROSIS A&SOCIATAON (REGISTERED NUMBER: 0290011J7)
Balance Sheet
31 December 2023
2023
Total
funds
2022
Total
funds
Unrestricted
funds
RestrTrcted
funds
Notes
FIXED ASSETS
Investments
12
660.307
660,307
642,707
CURRENT ASSETS
Debtors
Cash at bank
13
22,873
156592
22.873
247,139
3.385
270.842
90,547
179,465
90,547
270,012
274,227
CREDITORS
Amounts falling due within one year
14
(42,025)
(42,025)
(87.223)
NET CURRENT ASSETS
137,440
227 987
187 004
TOTAL ASSETS LESS CURRENr
LIABILITIES
797.747
90.547
888.294
829.711
NET ASSETS
797.747
90,547
888 294
829,711
FUNDS
Unrestricted funds
Restricted funds
15
797,747
90,547
829,711
TOTAL FUNDS
888 294
829,711
The charitable company is entitled to exemption from audil under Section 477 of the Companies Act 2006 for the year
ended 31 December 2023.
The members have not required the company lo obtain an audit of its fmancial statements for the year ended
31 December 2023 in accordance with Section 476 of the Companies Act 2006.
The trustees acknowledge their responsibilities for
(a)
ensuring that the charitable company keeps accounting records that comply with Sections 386 and 387 of the
Companies Act 2006 and
preparing financial statements which tsive a true and fair view of ihe slate of affairs of the charitable company as
at the end of each financial year and of its surplus or deficit for each financial yeai in accordance with the
requiren]ents of Sections J94 and 395 and which otherwise comply with the requirements of the Companies Act
2006 relating to fu￿nciaL statetnents, so far as applicable to the charitable company.
(b)
These financial Statements have been pre• in accordance with the provisions applicable to charitable companies
subject to the small companies regime.
The fmancial Statements were approved by the Board of Trustees and authorised for issue on
2024................................ and were signed on its behalf by:
.15 August
AT
S James - Trustee
The notes form part of these financial statements
Page 19

TH E TUBEROUS SCLEROSIS ASSOCIA TION
Notes to the Financial Statements
for the year euded 31 December 2023
ACCOUNTING POLICIES
BASIS OF PREPARING THE FINANCIAL STATEMENTS
The f￿ancial statements ol the charitsble company: which is a public benefit entity uader FRS 102, ILave been
prepared in accordance with the CharÉties SORP (FRS 102} 'Accounting and Reportino by Charities: Statement
of Recommended Practice applicable to charities preparing their accounts in accordance witb the Financial
Reporting Standard applicable in the UK and Republic of Ireland (FRS 10?) (effective l January 2019)..
Financial Reporting Standard 102 The Financial Reportin(w
Standard applicable in the UK and Republic of
Ireland, and the Companies Act 2006. The financial slateTnent5 have been prepared under the historical cost
conventiotL with the exception of investments which are included at market value, &s modified by the
revaluation of certain &5sets.
INCOME
All income is recognised in the Statement of Financial Activities once the charity bas entitlement to the fL￿ds, it
Is probable that the income will be received and the amount can be measured reliably.
In the case of a donation. entitlement usually arises immediately on its receipt. However, some gifts may include
terms or conditions which must be met before the Association is entitled to the resources.
In the c&se of a trrant, evidence of entitlement will usually exist when the fornlal offer of fmnding is
omrnunicated in writino to the Association. However. some ants will contsin ternis or conditions which must
be met before the Association hLs entitlement to the resources.
Entiilement to a le(yacy is recognised when it is probable thal it will be received. Reccipt is nornally probably
when there h&s been grant of probate. the executor5 have established that there are sufficient areas Èn the estate,
after settlino any liabilities, to pay the leoacy" and any conditions attached to the legacy aTe either within the
control of the charity, or have been meL
Entitlement to Tesearch conference income 15 on receipt of the bookino fee from the delegate.
Investment income comprises dividend5 and interest reccivable for the year. Dividends on equity securities are
recorded as revenue on the ex-dividend date. Interest income is recognised as it accrues, tskinu into account the
effective yield on the investment.
EXPENDITURE
Liabilitie5 are Tecognised &s expenditure as soon &s there is a legal or CODstrllctive obligatioll committing the
charity to that expenditure, It is probable that a transfer of economic ￿nefits will b¢ Tequir¢d in settlement and
the amount of the obligation can be measured reliably. Expenditure is accounred for on an accruals basis and has
been Classified under headinos that wegate all cost related to the categor).. INThere costs cannot be directly
attributed to particular headinJo they have been allocated to activities on a basis consistent with the use of
resources.
Grant5 offered subject to conditions which have not been met at the year end date are noted as a con]mitment but
not accrued as expenditure.
TAYGIBLE FIXED ASSETS
Depreciation is provided at the followino annual rates in order to write off each asset over its estitnated usefvl
life.
Fixtures and fittings
25f/io on redu¢ing balance
TAXATION
The charity is exempt from corpordtion tax on its charitable activities.
FUND ACCOUNTING
Unrestricted funds can be used in accordance with the charitable objectives at the discretion of the trustees.
Restricted fiu]ds can only be used for particular restricted pu￿OSe5 within the objects of the charity. Restrictions
arise when specified b￿. the donor OT when fvnds are raised for particular restricted purposes.
Paae ?0
continued...

THE TUBEROUS SCLEROSIS ASSOCIA TION
Notes to the Financial Statemellts- continued
for the year ended 31 December 2023
ACCOUNfii¥4G POIJCIES- eontinued
FUIYD ACCOUNfThG
Further explanation of the nature and purpose of each fi￿d is included in the notes to the financial statements.
PENSION COSTS AND OTHER posr-RETtREMENf BENEFITS
The charitable company operates a defined contribution pension scheme. Contrtbutions payable to the charitable
company's pensii)n scheme are charged to the Statement of Financial Activities in the period to which they
relate.
FifiANCIAL INSTRUMENTS
The charity only has fmancial assets and financial liabilities of a kind ttLat qualify as basic f￿anCIal instnllnents.
Basic f￿anCial instruments aTe initialll, recognised at transaction value and subsequently measured at their
settlement value with the exception of bank loans which are subsequently measured at the canying value plus
accrned interest less repayments. The financing charge to expenditure is at a constant rdte calculated using the
effective interest rnethod.
Debtors
Trade and other debtors are recognised at the settlement amount due after any trade discount offered.
Prepayments are valued at the amount prepaid after taking account of any trade discount5 (lue.
Cash at bank 2nd in hand
Cash at bank and in hand includes cash and short terni highly liquid investments with a short maturity of three
months or less from the date of acquisition or Openin￿ of the deposit or similar account.
Creditors 2nd Provisions
Creditors and provisioDS are recognised where the cbarity h&% a present obligation resulting from a past event
that will probably resuli in the transfer of fvnds to a third paty and the atnount due to settle the obligation can
be Me￿ured or estimat¢d reliably. Creditors and provisions ate norn￿[[y recognised at their settlement amount
after allowing for any trade diKounts due.
OTHER TRADIIYG ACTIVITIES
2023
2022
c￿lStmaS cards & other sale5
2,225
3.668
INVESTMENT INCOM
2023
2022
Income from managed ￿rtfoliO
Page21
continued...

THE TUBEROUS SCLEROSIS ASSOCIATION
Notes to the Financi21 Statements - continued
for the ):ear ended 31 December 2023
RAISING FUNDS
INVESTMENT MAIYAGEMENT COSTS
2023
2022
Portfolio ￿anagement charges
4.592
4,767
GRANTS PA YABLE
2023
2022
R¢search
2,109
183
The total grants paid to institutions during the year w&s as follows:
2023
2022
* University of Bristol NHS Foundation Tr￿t- Randornised Controll¢d Trial
of Acreptance and Cotntnitment Therapy in the Tuberous Sclerosis Complex
*Ulliversity Colleoe London - The TSC l and TSC2 Variation Databases
*lnstitule of Medical Genetics, Cardiff
*Research Department of Genetics. University College London
183
(226)
(1,370)
(51))
18i
Research Grants are awarded on an annual basis and are only renewed after an annual review. Itl accordance
with the SORP: only the fw5t year of the ￿nt is Cha￿ed ￿ainSt the Televani fwid up to tkne committed ￿￿ount
of the grant.
Ne¢yative balances represent the unclaimed elements of grants previously awarded, which have now ¢xpircd.
SUPPORT COSTS
Governance
costs
Manatrement
Other
Totals
Family Care & Support
Research
590
i77
8,375
5,69L
12,699
9.801
967
14.066
7,467
22,500
Support costs have been allocated between Raisino
donations and Legacies and the Actitivities of the
Association by reviewinu each cosi type and identifving what drives the cost and splittints based on those cost
drivers.
continued...

THE TUBEROUS SCLEROSIS ASSOCIATION
Notes to the Financial Statements- eontinued
for the year ended 31 December 2023
TRUSTEES, REMUNERATION AND BENEFITS
There were no trustees. remuneration or other benefits for the year ended 31 December 2023 nor for the year
ended J l December 2022.
TRUSTEESI EXPENSES
There were no trustees, expenses paid for the year ended 31 December202J nor for the year ended
31 December 2022.
The trustees aTe entitled to be paid expenses they incur in the oovernance of the Association. This may include
trav¢l, accommodation aDd similar expenses. No Trustees received payments for reimbursement of expenses
during the year.
STAFF COSTS
2023
2022
Wages and salaries
Social Security costs
Other pension costs
216.096
16,718
10.688
204,113
16,360
11,013
243,502
231486
The average monthly number of employees during the year was as follows:
2023
2022
Fundraising
Family Support and Communications
Research
No employees received emoluments in excess of £60.000.
COMPARATIVES FOR THE STATEMENT OF FINANCIAL AcrivtTIES
Unrestricted
funds
Restricted
funds
Total
flfftds
INCOME AND ENDOWMENTS FROM
Donations and legacies
236,732
4,500
241,232
Charitable activities
Research
22.000
22,000
Other trading activities
Investment incorne
3.668
17.740
3.668
17.740
Total
280 140
4,500
284,640
EXPEND￿ URE ON
Raisin(r funds
84,558
84,558
Charitable a¢¢ivities
Family Care & Support
Research
16),661
106,330
4,500
168,161
106,330
Page 2)
continued...

THE TUBEROUS SCLEROSIS ASSOCIATION
Notes to the Financial Statements - continued
lor the year ended 31 December 2023
COMPARA TIVES FOR THE STATEMENT OF FINANCIAL AcrivtTTES - continued
Unrestricted
Restricted
funds
funds
Total
funds
Totsl
354,549
4,500
359.049
Net gainsl(Ios5es) on investm¢nts
(87,971)
(87,971}
NET L¥COME/(EXPENDITURE)
(162,380)
(162,380)
RECONCII,IATION OF FUh￿s
Totsl funds brought for¥¥ard
992,091
992,091
TOTAL FUNDS CARRIED FORWARD
829,711
829 711
io.
INTANGIBLE FIXED ASSETS
Database
costs
COST
At l Jaiiuary 2023 and il Decernber £02i
19,624
AMORTISA TION
At l January 20?3 and 31 December2023
NET BOOK VALUE
At 31 December 202J
At J l December 2022
ii.
TANGIBLE FIXED ASSETS
FiKtures
fittings
COST
At l January 2023 and 31 December 202)
1.135
DEPRECIATION
At l January 202) and J l December 2023
NET BOOK VALUE
At ) l December 202i
At J l December 20?2
Pacre 24
continued...

THE TUBEROUS SCLEROSIS ASSOCIATION
Notes to the FiDaDcial StateTnents- continued
ror tbe )ear ended 31 Dccemb¢r 2023
12.
FIXED ASSET INVESTMENTS
2023
2022
Shares
BTewin Dolphin capital account
651203
9,104
628,541
14,166
660 307
642,707
Additional information as follows-.
Listed
investnients
MARKET VALUE
At l January 2023
Additions
Disposals
R¢valuations
628,541
165,929
(165,557)
22290
At 31 December 202J
651,203
NET BOOK VALUE
At 31 December 2023
651,20)
At 31 December 2022
628.541
All investments were managed through UK investment manavers.
Th¢ historical cost of the investments at the year end is £609,599 {2022 £597,504).
Investments (neither listed nor unlisted) were &s follows:
2023
2022
Brewin Dolphin capital account
9,104
14.166
13.
DEB TORS: AMOUNTS FALLING DUE WITIUN ONE YEAR
2023
2022
Other debtors
Prepayments
5.471
17.402
1,502
22,873
3,385
Page 25
continued...

THE TUBEROUS SCLEROSIS ASSOCIATION
Notes to Ihe Financial Statements - continued
for the ):ear ended 31 December 2023
14.
CREDtTORS: AMOUNTS FALLING DUE WITHIN ONE YEAR
2023
2022
Trade creditor5
Social security and other taxes
Other creditors
Accnjed expenses
8,238
5,263
1,482
27,042
36,776
5,241
383
44,823
42,025
87.22)
The provision for grants awarded is for the full an)ount of future expenditure up to the committed amount of
each grant. The following table shows the research institution. a breakdown of the unexpended commitment
bro￿lt fonvarf tbe amount pai¢ the commitments arisin(T during the year (and hence reco.(mised in the
Statement of Financial Activities (SOFA) and the unexpended COTnmitment carried forward at the end of the
year in respect of each ￿ant. Further detail in respect of each Is given in note 5.
At 1.1.23
SOFA
Paid
At 31.12.23
* Institute of Medical Genetics. Cardiff
* Cardiff University
* Research Department of Genetics.
University Colleoe, London
* University of Manchester, Faculty of
Life Sciences
* Erasmus MC. Department of Clinical
GenetLCS
* University College London - The TSC I
and TSC2 Variation Databases
* Whitehead Institute - Towards specific
Motor Inhibitors capable of re5CUiTi
Tuberous Sclerosis Complex
loss-of-thnction
* Cardiff Universlty - Tar￿Cting the
Refl/STATJ axis to treat Tuberous
Sclerosis Complcx
* Cardiff University - Chatacterising the
roles of exosotnes in Tubetous Sclerosi5
Complex
* University of Brsstol NHS Foundation
Trust - Randomised Controlled Tiial of
Acceptance and Commitment Therapy in
Tiiberous Scler05is Complex
* Institute of Psychiatry Psycholo￿ and
Neuroscience - NeuTocognitive predictors
of n¢urodevelopmental impainnent in
infants and toddlers with TSC
* Cardiff University - An innovative model
system to cell invasion in TSCILAM to
uncover new drug taraets and therdpies
*TANDem Consortiurn - to fund a nutnber
of small seed projects linked to the
TANDem project to help build research
apacity in TAND.
1,371
618
(lJ71}
618
(51i)
226
226
180
180
228
(228)
l85
185
5,169
4,544
625
620
620
i2,793
4,229
67
67
65
65
7,517
76,264
(2,1 l2)
28,497
P￿e 26
continued..

THE TUBEROUS SCLEROSIS ASSOCIATION
Notes to the Financial Statement5 - continu
for the year ended 31 December 21123
15.
MOVEMENT IN FUINDS
Net
movement
in tunds
At
31.12.23
At 1.1.23
UArestricted funds
General fimd
Designated Endowment Fund
300,000
5297ll
(70,073)
229,927
567 820
829.711
(31.964)
797,747
Restricted funds
Research
Sponsored events
46,047
44,500
46,047
44,500
90,547
TOTAL FUNDS
829.711
58.583
888 294
Net movement in fullds. included in the above are as follows:
Incoming
resources
Resources
expended
Gains and
losses
Movement
in funds
Unrestricted funds
General ￿ftd
Designated Endowment Fund
252,778
(322,851)
2,483)
(70,073)
22,290
271.080
(325.334)
22,290
(31.964)
Restricted funds
Research
Sponsored events
46,047
44.500
46,047
44.500
90.547
90.547
TOTAL FUINDS
361.6?7
325,334
22
58,583
Comparatives for movernent in fun(Ls
Net
movement
in funds
Transfers
between
fimds
At
31.12.22
At 1.1.22
Unrestricted funds
General fund
Designated Endowment Fund
108,969
883.122
(85.922)
76,458)
276,953
276,953)
300,000
529,711
992,091
162.380)
829,711
TOTAL FUNDS
992.091
162 380}
829,711
Page 27
continued...

THE TUBEROUS SCLEROSIS ASSOCIATION
Notes to the Financial Statements- continued
lor the year ended 31 December 2023
15.
MOVEMEKf ￿ FUNDS- continued
Comparative net mov¢m¢nt in funds, included in the above are &s follows".
Incoming
resources
Resources
expended
Gains and
losses
MovetThent
in funds
Unrestricted funds
G¢neral t.und
DeSi￿ated Elldowment Fund
262,)99
17.741
(i48.J21}
(6228)
(85,922)
(76 458)
87,971
280,140
(354,549)
(87,971)
(162,380)
Restricted fllnds
Education
Glasgow TSC Clinic
2.500
2,000
(2.500)
4.500
(4,500
TOTAL FUNDS
284,640
359,049)
(87.971)
162,380)
16.
RELATED PARTY DISCLOSURES
There were no related party transactions for the ycar ended i l December 2023.
Page 28