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 cased 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 rescch 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 enteriSing approach to inconje generation to drive moTe research - Having values that are inclusive, ambiiious and effective 2023 Business Plan The fst four years of our 2019-202J Strategy saw the TSA significantly reduce expenditure to address the ¢klty'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 ReClt 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 eY 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-fst TSA and TSC cornrnunity P0e 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 dia0$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 reSoUlg Continue our journey" to wOrki(r smarter, with more automarion and streamlinin(r across outputs Ft 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 Shin0 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 givi0 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 ManeMent (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 tOmoow. 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 OpponIty 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[LteeS, 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 infOrnll0n 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 proamMe. 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 extlY 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 UniveIty 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 ¢nUrage 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 meaning1 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 w0ed 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 aWarenS 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 Crdinatin0 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 repleniSFent 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 inC0e 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 tts 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 fidraiSerS 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 maner$. 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 expendItt 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 DeSIated 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 £5883 (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 sUlUS 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 eab}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 . Rruit 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 proaMMe. 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 bale[ 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 (vIral) o NHS TSC Clinics Lead Mi eetino (2 virti1, 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 rocSed 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¢ahers, 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 Includitt 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 transfornt10n and smart workin¢F to reach more people Work with our new IT provider to ensure smooth MIat10 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 CUent 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, independlt 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 SUeY 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 Inee5 on ...8 August 2024............... and Sied 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 tntee$ 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 trlteeS 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 reSpt 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 CoMpY 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 Undetanding 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 fldS 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 fidS 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 funciaL 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 fancial 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 fLds, 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 puOSe5 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 fid 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 fanCIal instnllnents. Basic fanCial 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 Meured 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 clStmaS 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 Trt- 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 Chaed 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 FUhs 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 brolt 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 - TarCting 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 Pe 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 DeSiated 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