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← The Tuberous Sclerosis Association

2024-12-31-accounts

Tuberous Sclerosis Association Annual Report

“Providing help for today and a cure for tomorrow”

Annual report and financial statements for the year ended 31 December 2024 Registered charity 1039549 (England & Wales). Registered charity SC042780 (Scotland) Company registration number 02900107

ANNUAL REPORT 2024

Trustees’ and Directors’ report

The TSA Board of Trustees, who are also directors of the charity, present their annual report and financial statements for the charity for the year ending 31 December 2024.

The financial statements have been prepared in accordance with the accounting policies set out in note 1 to the financial statements and comply with the Charity's governing document, the Companies Act 2006, the Charities and Trustee Investment (Scotland) Act 2005, the Charities Accounts (Scotland) Regulations 2006, FRS 102 "The Financial Reporting Standard applicable in the UK and Republic of Ireland" and the Charities SORP "Accounting and Reporting by Charities: Statement of Recommended Practice applicable to charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102)".

The Tuberous Sclerosis Association (TSA) was founded by four TSC families in 1977. It was registered as a charity in England (02900107) in 1994 and Scotland (SC042780) in 2011. It was also incorporated as a company limited by guarantee in England and Wales in 1994. Its registered address is: TSA, Courtenay House, Pynes Hill, Exeter, EX2 5AZ.

None of the trustees have any beneficial interest in the company. All of the trustees are members of the company and guarantee to contribute £1 in the event of a winding up.

The company's current policy concerning the payment of trade creditors is to follow the CBI's Prompt Payers Code (copies are available from the CBI, Centre Point, 103 New Oxford Street, London WC1A 1DU).

The company's current policy concerning the payment of trade creditors is to:

Trade creditors of the company at the year end were equivalent to five days’ purchases, based on the average daily amount invoiced by suppliers during the year.

Information on TSA Trustees who served during the year and up to the date of signature of the latest financial statements can be found on pages 8-9 .

In accordance with the company's articles, a resolution proposing who be reappointed as auditor of the company will be put at a General Meeting.

Auditor: Griffin Accountancy (Courtenay House, Pynes Hill, Exeter, EX2 5AZ)

Public benefit

The trustees have paid due regard to guidance issued by the Charity Commission in deciding what activities the charity should undertake.

The Trustees' Report was approved by the Board of Trustees.

....................................................

Dr Frances Elmslie (Chair of the Board of Trustees) 22 August 2025

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ANNUAL REPORT 2024

Statement of Trustees’ responsibilities

The Trustees are responsible for preparing the Trustees' report and the financial statements in accordance with applicable law and United Kingdom Accounting Standards (United Kingdom Generally Accepted Accounting Practice).

The law applicable to charities in England & Wales requires the Trustees to prepare financial statements for each financial year which give a true and fair view of the state of affairs of the Charity and of its incoming resources and application of resources, including its income and expenditure, for that period. In preparing these financial statements, the Trustees are required to:

In preparing these financial statements, the trustees are required to:

The Trustees are responsible for keeping adequate accounting records that are sufficient to show and explain the Charity's transactions and disclose with reasonable accuracy at any time the financial position of the Charity and enable them to ensure that the financial statements comply with the Charities Act 2011, the Charity (Accounts and Reports) Regulations 2008 and the provisions of the Trust deed. They are also responsible for safeguarding the assets of the Charity and hence for taking reasonable steps for the prevention and detection of fraud and other irregularities.

Disclosure of information to auditors

Each of the persons who are Trustees at the time when this Trustees' report is approved has confirmed that:

Auditors

The auditors, Griffin, have indicated their willingness to continue in office. The designated Trustees will propose a motion reappointing the auditors at a meeting of the Trustees.

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ANNUAL REPORT 2024 - 2025

Hallie’s story

05

About the TSA: Our goals, values 06 and public benefit

A message from our Chair and 07 Chief Executives

Meet your TSA team 08
Current TSA Board of Trustees 08
TSA leadership and wider team 10
Volunteers and Ambassadors 11
A new strategic period for 12
2025 - 2027
What we achieved in 2024 13
Support and information 14
Working with TSC professionals
Research and advocacy
Fundraising		 17
19
24
Money matters
How we spent funds in 2024
Financial overview for 2024		 26
26
27
Reserves policy
Investment policy
Our financial plans for the new		 28
29
30
strategic period
Endowment-like funds for ongoing		 31
activities explained
Governance and operations 32
Risk management 32
Risk register
Monitoring our success and impact		 32
34
Financial report 2024 35

Legal and admin information Hymn

Trustees

Charity numbers: 1039549 (England and Wales), SCO42780 (Scotland). Company number: 02900107

Registered office: The TSA, Courtenay House, Pynes Hill, Exeter, EX2 5AZ

Auditor: Griffin, Courtenay House, Pynes Hill, Exeter, EX2 5AZ

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ANNUAL REPORT 2024

HALLIE’S STORY

When Louise and Darian’s little girl Hallie was diagnosed with TSC, they entered an unfamiliar world. By connecting with others in the TSC community, the family found their feet once more.

“Our daughter Hallie was diagnosed with TSC when she was two months old. Before the diagnosis, we had no indications that there was anything of concern.

It all started when we noticed that Hallie’s arm was twitching. It slowly progressed to the point that her whole body was twitching. We went to the hospital and what followed was two weeks of no sleep, trying to control seizures happening to Hallie at least twice every 30 minutes. Hallie had lots of tests and we were then told that she has TSC.

We were then moved to Cardiff Children's Hospital and met Hallie’s new specialist clinicians. Hallie was on many different medicines throughout the day and night, as well as baby formula every three hours. The biggest gap we had in the day was when the doctors would come in to talk to us! We wrote Hallie’s timetable on a hospital coffee cup because there was no way we could remember it all.

After another month in hospital, we were discharged. We were told to look out for infantile spasms (seizures) and that they’d show within six months. We thought we'd got away with no spasms, but at five months and three weeks they started. We’ve been very lucky that Hallie responded well to the seizure medicines she’s been on, we’ve been seizure free for over a year.

After this, we attended TSA Big Day. It was really nice to see and talk to others who know what we’re going through. The biggest struggle is not knowing how TSC will affect Hallie in the long run. Talking to others going through what you are really helps.

Hallie’s still on medication, but we’re down to twice a se — day which is a world away from where we started! She has infusions twice a week at home and monthly blood tests. She's recently had her yearly scans and although the TSC tumours are growing the doctors are still happy with how she’s doing. Hallie started walking and is a very confident little girl who has a brilliant personality and sense of humour.”

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ANNUAL REPORT 2024

ABOUT THE TSA

Our goals, values and public benefitOur goals, values and public benefit

The Tuberous Sclerosis Association (TSA) is the only UK-wide charity dedicated to improving the lives of people with the rare genetic condition Tuberous Sclerosis Complex (TSC).

Around 1 million people worldwide live with TSC and there is currently no cure. TSC causes tumours to grow in different areas of the body. Common ways that TSC impacts people include epilepsy, autism, learning difficulties and skin, kidney, heart and lung problems. TSC can be devastating on all aspects of life, for people with TSC but also their families and carers.

We have three main charitable objectives:

We do this through:

Some of our most recent achievements in these areas, and some of our plans for the future, are listed later in this report.

Our vision is a world where TSC and its effects are conquered. Our mission is to provide help for today and a cure for tomorrow.

We are a small but extremely ambitious charity, demonstrated even by this annual report which surpasses the reporting requirements as set out by charity regulators.

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ANNUAL REPORT 2024

A MESSAGE FROM OUR CHAIR AND CHIEF EXECUTIVES

Dear reader,

This annual report captures the recent journey and impact we have all made together, in improving the lives of people affected by Tuberous Sclerosis Complex (TSC). It is an opportunity to reflect on our work throughout 2024, as well as what we’re doing in 2025 and beyond as we work to do even more.

Highlights of what we’ve recently accomplished include:

You can read more about some of the things we achieved in 2024 on pages 13 - 25 .

As we enter a new strategic period for 2025 - 2027, we have lots of reasons for optimism. Our new strategy is extremely ambitious for a charity of our size, but we truly believe that everything in there is achievable and reflects what the TSC community should expect and certainly deserves. You can read more about our new strategy on page 12 .

A key area of our work for the last few years has been on strengthening financial resilience. Looking ahead, this continues to be a key pillar for us, such as diversifying our funding streams and ensuring that we remain adaptable in the face of any challenges. You can read more about our finances on pages 26 - 31 .

We are proud that the TSA is a charity that remains transparent, approachable and impactful. This report underlines all of this, with our team making a conscious effort to really show our work, its impact, and the foundations that underpin everything.

Everything we achieve is possible only thanks to the passion and commitment of the TSC community, the TSA team, and our incredible volunteers. Our deepest gratitude goes to all individuals and groups we worked with over the last 18 months. Whether you provided us with insight and feedback, fundraised for us, or partnered with the TSA on any of our projects: Thank you, from us to you.

Dr Frances Elmslie Chair, TSA Board of Trustees

Dr Pooja Takhar and Luke Langlands TSA Joint Chief Executives

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ANNUAL REPORT 2024

MEET YOUR TSA TEAM

Current TSA Board of Trustees

Dr Frances Elmslie (Chair)

Frances is the Clinical Lead for South West Thames Centre for Genomics, based at London St George Hospital, as well as Clinical Director of the South East Genomic Medicine Service Alliance. Frances leads the team that delivers St George’s TSC service which cares for over 700 people with TSC. Dr Elmslie is also the Clinical Lead for the NHS England TSC Rare Disease Collaborative Network. Frances became Chair of the TSA in December 2023. She is also a Co-Investigator for the Rare Disease Node in mTOR pathway disorders.

Annemarie Cotton (Vice Chair, appointed November 2024)

Dr Frances Elmslie

Annemarie is a parent to a young adult daughter with TSC and has been involved with the TSA for the past 20 years. She has previously worked clinically in the NHS and currently works for a local authority supporting families of children and young people with Special Educational Needs to navigate the education system. Annemarie is passionate about equality of care and about working to ensure all members of the TSC community can access high quality relevant information to meet their needs.

Simon James (Treasurer)

Simon is a Fellow of the Institute and Faculty of Actuaries. He has worked in actuarial roles in life insurance, pensions and banking. Until his recent retirement, Simon was Director of Actuarial Apprenticeships at BPP Actuarial Education. In addition to leading a large team, he taught and developed materials for various actuarial subjects including risk management, business finance, investments and communications. He is keen to use this knowledge to help the TSA. Simon is also Treasurer and Trustee for his local village hall and also Trustee for a multi-academy trust in Swindon.

Annemarie Cotton

Our other highly valued Trustees are:

Simon James

Company secretaries: Luke Langlands and Dr Pooja Takhar.

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ANNUAL REPORT 2024

Seven out of nine Trustees either have a lived experience or professional focus on TSC. This alongside our other engagement work ensures that the TSA is steered by the views of individuals, families and professionals in the TSC community.

We were delighted to welcome Dr Stacey Bissell and Maxine Smeaton to the board in 2024, with both candidates bringing valuable experience in TSC research. Dr Bissell is a passionate and active member of the TSC research community, while Maxine was previously Chief Executive of the TSA and the Epilepsy Research Institute UK.

The TSA Board of Trustees formally meets four times a year but communicate much more regularly with the senior TSA team in order to achieve the activities in our strategic plan. The Joint Chief Executives hold separate monthly meetings with the Chair and Treasurer to allow for ongoing updates, strategic planning, and addressing any issues that may arise.

Board members have a wide range of backgrounds, skills and lived experiences related to TSC, and are encouraged to take up training and development opportunities to increase their knowledge and expertise. A skills audit is performed every 12 months by the Trustees, to gain a better understanding of the Board’s overall makeup and to identify knowledge or background gaps.

When recruiting for a new Trustee, the role is advertised on popular third-sector websites and also across TSA platforms. We encourage and welcome applications from the TSC community. Candidates are considered only if they can demonstrate that they may fill skills gaps identified within skills audits.

The roles of Chair and Vice Chair of the TSA Board of Trustees is regularly rotated, with the candidate selected based on their overall experience and expertise. New members of the Board of Trustees are voted in as part of the TSA’s Annual General Meeting (AGM).

66 The TSA has been very supportive and I'm truly thankful ry) - Person with TSC

You’re very supportive, and really the only people who have ever really listened - Parent of child with TSC

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ANNUAL REPORT 2024

TSA leadershipTSA leadership

The TSA staff is small but mighty, with 10 individuals (seven people full-time equivalent) achieving everything that we do for the TSC community. The team is led by two Joint Chief Executives, Dr Pooja Takhar and Luke Langlands.

Pooja and Luke bring stability and passion to the TSA, holding the Joint Chief Executive role for several years. With a combined 15 years of experience at the TSA, the pair have helped to ensure that the charity is built on strong foundations that enable the greatest impact possible for people with TSC. However, this is not possible without the wider TSA team. Pooja and Luke are very grateful for their amazing work .

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Dr Pooja Takhar
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The wider and vital teamThe wider and vital TSA team

The TSA is proud of the small but incredibly impactful TSA team. Our team is extremely valued, with a working environment based on kindness, respect and understanding. We’re committed to providing salaries that are competitive with similar sized organisations, and we ensure that the effort of our team is acknowledged and celebrated.

New members of the TSA team are provided with a clear and indepth induction, including an employee handbook. The induction largely focuses on the TSC community and what life is like for people affected by TSC, as this is the best way for team members to have the biggest impact as quickly as possible.

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Luke Langlands
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Some of the TSA team during lunch at Big Day 2024

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ANNUAL REPORT 2024

The TSA team is proud to improve the lives of people with TSC. However, being part of TeamTSA can sometimes mean dealing with challenging circumstances. This is why we’ve introduced an Employment Assistance Programme, providing mental health support and financial advice so that the team can provide the best work possible for the TSC community. It’s also important that our team develops professionally, which is why we actively seek opportunities for the team to grow through online and in-person training.

Volunteers and AmbassadorsVolunteers and ambassadors

Our work is possible only thanks to the generosity, passion and commitment of those formally and informally volunteering their time and expertise to improve lives in the TSC community.

Those who choose to volunteer for the TSA, or agree to become TSA Ambassadors, play a vital role in everything that we do and achieve for the TSC community. In order to provide clear guidelines and expectations, and as safe an environment as possible, we kindly ask that people who take on formal volunteer roles sign our Volunteer and Ambassador Agreement.

Our Volunteer and Ambassador agreement sets out what volunteers and ambassadors can expect from the TSA in their voluntary roles, what activities they might be asked to do, and what actions we hope from volunteers and ambassadors in return.

TSA ANNUAL GENERAL MEETING 2025

The TSA’s AGM for 2025 will take place virtually on Thursday 27 November 18:00 - 19:30.

Including TSC and genetics Q&A, with specialist TSC consultant geneticist

Agenda items are:

This notice is given by order of the TSA Board of Trustees. Courtesy of the TSA’s Company Secretaries (Luke Langlands and Dr Pooja Takhar).

Register for the AGM at: tuberous-sclerosis.org/agm2025

If you’ve been in touch with the TSA, you’re considered a member. This means that you can attend and vote at the AGM. You’re entitled to appoint one or more proxies to attend and, on a poll, vote instead of you. A proxy need not be a member of the TSA. There is no contract of service between any Trustee and the TSA. Any member interested in joining the Board of Trustees, or would like to discuss anything with the TSA’s Chair, should email admin@tuberous-sclerosis.org or telephone 0300 222 5737.

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ANNUAL REPORT 2024

A NEW STRATEGIC PERIOD FOR 2025 - 2027

The TSA’s strategy for 2025–2027 builds on our past successes and our deep commitment to the TSC community, all underpinned by clear priorities. The next three years are focused on sustainable growth while making ambitious and meaningful progress in all areas of our work.

Our strategy’s ultimate goal is to ensure that everyone affected by TSC gets the support, care, and research advancements they need and deserve, both now and in the future. Our guiding mission remains the same: “To provide help for today and a cure for tomorrow.”

Our 2025 – 2027 strategy has four key priorities:

We’ll accomplish our strategic priorities by continuing to foster strong relationships with the TSC community, who remain firmly at the heart of everything we do.

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ANNUAL REPORT 2024

WHAT WE ACHIEVED IN 2024

ee A new strategic periodThe end of our previous strategy: A major success

2024 was the final year of our previous strategic period for 2019 – 2024. We had three strategic aims for this period, all of which we were successful in achieving:

1. Reach more people

There are around 10,000 people with TSC in the UK. By the end of 2024, our reach increased by 86%, to 6,482 people , compared to the start of 2023 when we reached just 3,489 people.

2. Drive more research

Since our launch, we’ve been at the heart of research in the areas most important to people affected by TSC. We had to temporarily reduce expenditure to balance the books which meant we were unable to run funding rounds annually. We then acknowledged that TSC is too big to tackle alone. Therefore, we began greater collaboration with other funders to create real impact and progress. These partnerships, such as with Epilepsy Research Institute UK, unlocked £1.5m in TSC research. For every £1 invested by the TSA, we unlocked a further £5 into TSC research from external partners that might not have otherwise happened.

3. Continue to balance the TSA's finances

After several unsustainable high deficit years, the TSA team has steered the charity back to stronger financial foundations. It remains an incredibly challenging time for all small charities, including at the TSA, but we now have greater financial resilience to be able to achieve our ambitious aims. Without this, the long-term future of the charity would be in doubt.

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ANNUAL REPORT 2024

~~C~~ Support and information o

TSA Support Line

In 2024, the TSA Support Line continued to be central to our support and information projects. The support line received similar enquiry levels to 2023, with 292 enquiries across telephone (100), email (144), webchat (32), social media and web form (17), and post (1).

You couldn’t have possibly helped any more than what you did ry - TSA Support Line user

The service that you provide is amazing ee - TSA Support Line user

The most common reasons people contacted the TSA Support Line in 2024 were: 1. Emotional support 2. The physical impact of TSC 3. The TSA Support Fund

  1. Accessing specialist TSC clinics 5. Information for professionals, such as doctors, teachers and social workers

Compared to previous years, we received lots of questions about access to cannabidiol (Epidyolex) for TSC-related epilepsy. This is likely because the medicine received approval for use on the NHS by UK decision-makers during this time. We made sure our support team was well prepared for this, with briefing documents and training on cannabidiol beforehand.

TSA Welcome Packs

TSA Welcome Packs continue to be a vital reminder to the TSC community that you’re never alone with the condition. These packs, available as physical or digital format, are particularly important to individuals and families recently diagnosed with TSC.

In 2024, 23 TSA Welcome Packs were sent to households new to TSC. This meant that an individual or family were given a vital foothold into a new and likely confusing world, so they could start to navigate it more effectively and confidently, starting with the strongest foundations possible.

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ANNUAL REPORT 2024

TSA Support Fund

TSC can have a devastating impact on all aspects of the lives of individuals and families, including finances. To help with this, the TSA Support Fund offers small but important financial grants to people in the TSC community who are in financial hardship.

In 2024, 18 TSA Support Fund grants were awarded to the TSC community. Reasons that people requested the fund include:

  1. Items to help with physical disabilities, such as wheelchairs

  2. Medical items, such as seizure monitors

  3. Part-funding of respite breaks or days out

  4. Emergency funding for new household items

  5. Repairs and purchases of whitegoods, such as washing machines

The TSA Support Fund is a lifeline for people who really need help. The TSA, for us, means a lifeline.

Keeping you updated

In 2024, 35,000 users accessed our website, underlining how important our website is in sharing TSC information. In comparison, this figure was 22,000 in 2023.

The TSA’s social media channels continue to be an important source of information for the TSC community. Our social reach increased by 31% in 2024, making more people aware of TSC as a condition and also the impact that the TSA has on improving people’s lives.

In 2024, we launched a new monthly round-up newsletter, responding to the feedback that people in the TSC community are incredibly busy and short of time. This gives readers a bitesized view of all-things TSA and TSC. Around 4,000 people receive this newsletter monthly.

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ANNUAL REPORT 2024

TSA community events

TSA face-to-face and virtual events offer a much-needed chance for connection, support, and shared learning in the TSC community.

Outlook is for adults with TSC. It’s a way to make lifelong friends in-person and virtually. The event is the highlight of the year for many attendees. We welcomed 40 people to Outlook 2024 , which was held in Cardiff.

Big Day is our largest event, with everyone in the TSC community invited. Families, individuals, professionals and researchers all come along to discuss life with TSC, learn about TSC research and make new connections. We were delighted to have 120 people attendees at Big Day 2024 , which took place in Reading.

Across 2024, we offered virtual opportunities for people to meet, learn and connect. This included a special monthly TSC Art Club. Professional artist Sarah Goy, who has TSC, provided an empathetic environment for people in the TSC community to express their feelings and thoughts creatively.

We had 19 virtual and in-person events in 2024 . 9 in 10 people say our events tuberous are very important to them 4 i ~ It was very informative and engaging, it was good to talk 66 about TSC with others ee - TSA event attendee In 2025, some of the things we plan to do are:

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ANNUAL REPORT 2024

Working with TSC professionals

A key part of our work for the TSC community is working with professionals across the sectors who support people with TSC. This includes doctors, nurses, social workers and education professionals.

TSC Rare Disease Collaborative Network

The TSA is proud to be secretariat to the TSC Rare Disease Collaborative Network (RDCN), which is made up of 23 clinics across the UK focused on TSC. Through the network, TSC specialist healthcare professionals can connect and learn from one-another on best practice in TSC care.

The TSC RDCN entered its second year in 2024, with the network achieving major milestones:

Thanks to the TSC RDCN, there is greater equality across the UK in diagnosing, treating and managing TSC. This means improved care for everyone in the TSC community, no matter where you live in the UK.

Valued experts

We do our upmost to support the TSC clinical community. However, this also works the other way around, with the TSA being incredibly grateful for the support that we receive from TSC clinics.

We ask individual clinicians to review TSC information that we share that’s focused on the medical side of the condition, such as information on our website, the TSA Support Line, or physical leaflets. This helps to ensure that all the medical information that we share with the TSC community is up-to-date, relevant and meaningful.

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ANNUAL REPORT 2024

Accredited TSC courses for professionals

One of the major ways that we support professionals who aren’t familiar with TSC is in helping them to better understand the condition and what it means to live with TSC.

We regularly hear from people through lots of different channels, such as the TSA Support Line or at our events, about the challenges in ensuring people with TSC get the support they need away from TSC specialists. Lots of professionals also get in contact with us directly, asking for more information about TSC. This is especially common in schools - such as with teachers or teaching assistants - and in social care, such as staff at residential homes. We heard this challenge so often, from so many people, that we knew that we had to act to make sure that things could change.

The result of this was the TSA launching the world’s first and only Continual Professional Development (CPD) courses about TSC for education professionals and social care professionals. In 2024, these courses were further boosted with additional updates, ensuring that they remain relevant. Future updates are also planned.

Our TSC CPD courses help give professionals who are working with people with TSC the confidence to support people with the condition more effectively.

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professionals agree that TSA training courses met their learning objectives

Thank you for this great course and your efforts, much appreciated!

In 2025, some of the things we plan to do are:

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ANNUAL REPORT 2024

Research and advocacy Research and advocacy

Funding TSC research

The TSA is the only UK-wide charity that focuses its research funding on TSC. Our research grant commitment in 2024 was £65,666. The TSA Board of Trustees remained committed to honouring all research commitments in 2024, utilising the Designated Endowment Fund to cover the costs of our ongoing research grants programme.

The TSA's research portfolio of previously committed grants in 2024 consisted of 6 live grants , which were all jointly funded. Our portfolio of ongoing projects is worth £188,474 .

Our live grants for 2024

Lead researcher Institution Research project
Dr Sam Amin
Dr Ingram Wright		 University of
Bristol		 Better understanding the accessibility of mental
health services for children and young people
with TSC
This project is developing more appropriate and
effective ways for children and young people with
TSC to access mental health services and
psychological support in the UK. This research hopes
to demonstrate a clear benefit of providing
therapies to children and young people with TSC
who are experiencing psychological or emotional
distress.
Co-funded byan anonymous major donor.
Prof. Petrus
de Vries
Prof. Anna
Jansen		 University of
Cape Town
UZ Brussels		 The TANDem Project
The TANDem Project brings together a worldwide
team of families affected by TSC, researchers and
clinicians to provide scientific evidence for greater
intervention and treatment of TSC-Associated
Neuropsychiatric Disorders (TAND, which includes
anxiety, depression and challenging behaviour). The
two-part project will first focus on the development
of a self-report TAND checklist and identification
app, to measure how people are affected by TAND.
The second part of the study will investigate the best
ways to treat TAND.
Co-funded bythe KingBaudouin Foundation.

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ANNUAL REPORT 2024

Lead researcher Institution Research project
Ms Shoba Srivastava University of
Cape Town		 TAND in India
This PhD project will ask families affected by TSC and
their clinicians what they know about TAND, what
their TAND needs are and what their priorities would
be for TSC-related action in India. It'll examine how
useful certain TAND identification and management
strategies currently are for families in India, with the
potential for findings to have worldwide importance.
Rigorous work by the TSA as part of the funding
application confirmed that the research will not
result in committed funds filtering beyond the remit
and focus of the research itself.
Co-funded bythe TANDem Consortium.
Dr Liezl Schlebusch University of
Cape Town		 Well-Beans for Caregivers Programme
This study is investigating the feasibility,
acceptability, and potential impact of a World Health
Organization-developed Caregiver Skills Training
programme when used in the TSC community.
Co-funded by TANDem Consortium.
Dr Stacey Bissell University of
Birmingham		 Exploring Sleep experiences in people with TSC
(e-Slept)
Getting to sleep and waking up during the night are
major challenges in the TSC community. The e-Slept
project aims to document sleep challenges in people
with TSC, by asking their caregiver to document the
experiences. It’s hoped that this will ultimately help
to better manage sleep problems in TSC.
Co-funded byTANDem Consortium.

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ANNUAL REPORT 2024

Lead researcher Institution Research project
Dr Amanda
Almacellas Barbanoj		 University
College London		 Investigating new targets for TSC treatments
This project will explore the other ways in which a
mutation in the TSC1/2 genes affects how neurons
form and connect with each other. It’s hoped that
this will help scientists gain a better understanding
of how seizures and difficulties associated with
development, mental health and learning abilities
arise in TSC and other neurodevelopmental
disorders. More importantly, this in-depth study will
uncover potential targets of new therapies that
could significantly improve the quality of life of the
one million people living with TSC worldwide and
their carers.
Co-funded bythe EpilepsyResearch Institute UK.

TSC Research Volunteer Network

Involving the TSC community in TSC research, called Patient and Public Involvement (PPI), is vital in improving our understanding of TSC. After all, the TSC community are the experts.

By working with the TSC community on our research priorities, we ensure that the priorities focus on what matters the most and has the biggest impact. There are 39 members of the TSC Research Volunteer Network , including people affected by TSC, parents, carers and siblings of people with TSC. In 2024 they helped shape the TSC research landscape by:

The network plays an invaluable role in shaping TSC research. For example, exclusion criteria (reasons people might not be allowed to take part) for a recent clinical trial of a potential TSC medicine was updated after the network said that it was too restrictive and would significantly reduce the number of people who could participate. This led to more involvement in the clinical trial by people in the TSC community.

The comments from the TSA Research Volunteer Network mean we’ll definitely make some changes to the research, to highlight these points. Great suggestions! - TSC researcher

Researchers supported by the network highlight how working with people in the TSC Research Volunteer Network has enhanced their project, making it more impactful and relevant.

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ANNUAL REPORT 2024

Campaigning and advocacy

Throughout 2024, the TSA continued to ensure that the voices, needs and expectations of the TSC community were heard clearly, and acted upon, across different situations and opportunities:

Access to new and vital treatments

The TSA actively represented the TSC community in four NHS funding reviews for:

These reviews were with the National Institute of Health and Care Excellence (NICE), which decides what is funded by NHS England, and the Scottish Medicines Consortium (SMC), which decides what is funded by NHS Scotland. We ensured that the perspectives and experiences of people living with TSC were genuinely considered in these meetings, leading to those in the TSC community being central to decisions that will dictate their health and wellbeing.

Dr Amanda Almacellas Barbanoj (TSC researcher)

Influencing national rare disease policy

The TSA is a passionate and active influencer in national policy forums. This ensures that the TSC community is front-of-mind when progressing rare disease care. Places we did this in 2024 include:

Dr Elaine Dunlop (TSC researcher)

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ANNUAL REPORT 2024

Ensuring a TSC-focus at professional gatherings

When wider health, research and social care professionals come together, we make sure that the TSC agenda is heard, understood and acted upon. In 2024, this included:

In 2025, some of the things we plan to do are:

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ANNUAL REPORT 2024

Fundraising and income generation

We simply wouldn’t be here without the incredible passion and determination of the TSC community. Your fundraising and support means everything to us and we are very thankful.

London Marathon 2024

We had a record-breaking year for us at the London Marathon. We had 8 runners and their efforts were well worth it, with an incredible £27,550 (including Gift Aid) raised for our work – the most ever raised by the TSA at the London Marathon!

Big Give 2024

Big Give is a popular way for people to give back to the TSC community, where for one week only the value of donations is doubled. In 2024, we asked people to donate to help fund the TSA’s support services. We raised a fantastic £10,424 !

In memory giving

In memory and legacy giving is an incredibly powerful way to give back to the TSA and TSC community. We’re very thankful for all donations we give but treat those given in memory or as part of a gift in Will with the greatest of respect.

In 2024, we received £21,466 through in memory giving, such as from families asking loved ones to donate to the TSA to mark the life of someone now departed. We also received a major legacy gift from an incredibly kind individual who considered us in their Will. This legacy gift has helped to shape future years at the TSA.

Corporate giving

Corporate giving is increasingly important at the TSA, with opportunities to connect with businesses and places of work with an interest in TSC being something we want to do more. Our work to expand corporate giving in 2024 started with the new TSA Corporate Community, highlighting the fantastic efforts of our corporate partners in a quarterly newsletter, inspiring our connections to find ways to support the TSA that align with their values and goals.

Coveris made the TSA their Charity of the Year in 2024 and raised a fantastic £3,777 . Also in 2024, mobile phone network operator Giffgaff awarded the TSA a wonderful £5,648 after a TSC community member nominated us for their charity payback scheme. Giffgaff members voted for the TSA after reading some touching stories shared by our community.

We were delighted to receive an amazing £50,000 from a one-off donation by Foresters Financial. We received this after Becca Rasho and her family shared a video with Foresters on what life is like with TSC.

In 2025, some of the things we plan to do are:

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ANNUAL REPORT 2024

MONEY MATTERS

Where we spent funds in 2024

We’re committed to doing as much good as possible for the TSC community, across all aspects of life with TSC. This means making sure that as much of our outgoings as possible is used where it’s going to have the biggest difference. We try to keep overheads to a minimum, while giving our small and passionate team the things they need to do their very best across support and information, research, advocacy and fundraising.

As shown in the chart below, in 2024 we had a roughly even split across spend in our different teams and projects. 33% of outgoings in fundraising might seem high, but income generation is the only way we can continue to survive and be here for the TSC community.

On average, UK charities get £3 - £4 for every £1 that they invest in fundraising. We exceeded this in 2024, bringing in £5 for every £1 spent in fundraising . This shows that we are very effective in getting the maximum return possible in what is given to us, meaning that donations are as impactful as possible.

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Support,
Fundraising information and
33% events
35%
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Research and advocacy 32%

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ANNUAL REPORT 2024

Financial overview at the end of 2024

At the end of 2024, the TSA had total funds of £1,299,561 . This consisted of:

More information on each fund is provided in our financial statements, starting on page 37 .

The total income for the year was £656,551 (2023: £511,349 ). Our total investment gains were £50,981 (2023: £22,290). The overall surplus for the year was £239,063 (2023: £230,787).

The surplus is largely driven by two substantial gifts from two individuals in the TSC community who kindly included the TSA in their Wills. The designated funds have been broadly treated as an endowment, invested with professional advisers to provide a resource which supports the TSA in delivering its charitable objectives. This enables the TSA to:

We anticipate that our strategic period for 2025 – 2027 will include managed, considered deficit years with the goal of returning to a small surplus by 2028 . This is in contrast to previous deficit periods, where covering the costs was in danger of becoming unmanageable. This is why sustainability is a significant focus of our charity’s strategy for 2025 - 2027, which includes ambitious projects and vital ongoing activities to improve the lives of the TSC community now and in the future.

The TSA Board of Trustees has a clear and transparent plan to maximise the potential of our surplus, stewarding funds in a way that’s sustainable and sensible.

The plan encourages financial resilience, helping us to achieve what we want to do in our strategic plan for 2025 - 2027. The alternative option, to increase expenditure to levels unsustainable beyond several years, would risk the long-term financial viability of the charity and everything that we achieve for the TSC community.

Read about this plan on page 30.

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ANNUAL REPORT 2024

Non-designated reserves and reserves policy

The TSA Board of Trustees has agreed to hold up to the equivalent of six months of running costs as free reserves. This is around £222,000 and allows the charity to cover operating deficits and unexpected drops in income, while ensuring liquidity for ongoing costs. We also hold designated funds in order to deliver vital projects aligned with our ambitious strategic plan. This overall approach strengthens the TSA’s resilience and grows our services to meet the unmet needs of our community, while ensuring funds remain readily available to support key activities that help us achieve our vision and mission.

This reserve level has been determined based upon analysis of cash flow requirements from previous financial years and estimated cash flow requirements for forecasted years of the charity’s current strategic plan. All of this is based on pre-planned activities. Reserves are spread across cash, savings and investment products. Where and how capital is held is determined by how these funds are intended to be used, to ensure liquidity and sound financial management.

If the value of our free reserves falls below three months of operating costs, the TSA Board of Trustees will consider reallocating designated funds which were originally intended for other activities and projects or, as a final resort, drawing from the endowment-like funds (see later sections). This would ensure the charity’s long-term survival and stability.

The process was so easy from start to finish the conversation was so easy and I was treated like part of a big family

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ANNUAL REPORT 2024

Investment policy

The TSA Board of Trustees has decided on a clear plan for the ongoing investment and management of the TSA’s reserves to ensure long-term financial resilience, achieved while meeting the planned objectives of our current strategy. The TSA’s investment policy follows best practice from the Charity Investment Governance Principles Guide.

A total returns strategy has been adapted as part of our investment planning. As of 2025, the ‘endowment-like’ designated funds are held within investment products currently managed by our investment partner, Brewin Dolphin. 27% of funds held with Brewin Dolphin are in cash products. 71% are in other investments, and the remaining 2% in other assets. This is done under a discretionary investment mandate.

Environment, Social and Governance factors have been considered in our investment policy. This has resulted in a restriction on investing in funds related to tobacco.

Our investment objective is to maximise total returns over the longer term and to provide a stable level of income to be generated with a medium level of risk. The level of risk applies to the portfolio as a whole, not to individual stocks.

In the year ended 31 December 2024, investment income from the year was £15,969, with an increase in the market value of those investments of £50,981 . Over the longer term, our investment managers have consistently outperformed the benchmark. Their performance continues to be kept under review and Trustees have an annual review meeting with them. The Trustees have agreed a formal investment policy reflecting the investment objectives.

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ANNUAL REPORT 2024

OUR FINANCIAL PLANS FOR THIS STRATEGIC PERIOD

As of Q3 / Autumn 2025, the TSA’s fund allocation aims to be the following. This plan, agreed by the TSA Board of Trustees, is in-keeping with our constitution:

The ‘Endowment-like’ funds have been made possible thanks to the historical and recent gifts in Wills that we received from two kind individuals. Although the projects within these funds are vital to improving the lives of people in the TSC community, it is unlikely that they could be funded from external funders or providers. These projects include funding seedcorn TSC research grant rounds, led directly by the views of the TSC community, and benevolent grants to support those in the TSC community who are facing financial crisis.

Designated funds explained

We have identified a series of major projects that have been allocated designated funding as part of our strategy for 2025 -2027. Further details on these projects is in our Strategy Implementation Plan which demonstrates the charity’s ambition to invest funds to grow our service offering for the TSC community. Projects include, but are not limited to:

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ANNUAL REPORT 2024

Designated projects are reviewed every 12 months, based on the strategic plan and period.

‘Endowment-like’ funds for ongoing activities explained

These designated funds are treated like an endowment. This means that we retain the capital but spend the income, allowing us to self-fund some vital activities from our strategic plan, for current and future beneficiaries, in a sustainable manner. Selected activities will be in areas that are incredibly important to our vision and mission. These activities would be unlikely to attract external funding, making it even more important that we have a way to self-fund them.

These projects are expected to continue year-on-year, allowing the TSA to access long-term funding for each activity. Not having these activities would have a significant negative impact on the TSC community. The projects in this fund are currently:

The decision to spend down any capital in this fund would only be considered under exceptional circumstances for either the charity or the TSC community. Such as:

The TSA Board of Trustees has worked incredibly hard to develop a meaningful strategy to make best use of our funds. The Board is confident that the endowment-like funds will have a significant impact on the TSC community today and into the future.

This reserves and investment approach ensures the TSA can continue to expand vital services, invest in research and innovation, and deliver long-term impact for the TSC community.

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ANNUAL REPORT 2024

GOVERNANCE AND OPERATIONS

In 2024, we began an ambitious project to make our governance and operations more datadriven. This work continues today, so we can be more evidence-based and values-based.

We’ve introduced new and improved ways to share feedback on how TSC affects people, most notably by proactively asking people more, whether in surveys, on the TSA Support Line or during events. We did this to better understand who in the TSC community we most often engage with and support. This includes gathering information on daily challenges with TSC, why people turn to the TSA, and broadly what life with TSC in the modern world is really like.

Gathering views more effectively will mean that the significant and ongoing projects we do for the TSC community will have a much bigger impact, as we can be more confident in the difference that they’re making and what things the TSC community would like more focus on.

Risk management

Strategic planning and risk management are a central part of the ongoing work of the TSA’s Board of Trustees and senior team. The TSA follows recommendations by the Charity Commission on risk management (document CC26).

The Trustees are also responsible for monitoring and overseeing the financial performance of the TSA, which includes:

Risk register

A risk register of different categories (governance, operations, financial and external) is completed annually. It is regularly referred to by the TSA Board of Trustees and leadership team. It considers potential risks and their impact, existing prevention controls and how to further expand on these controls. The register discusses assurances that protect against risks, and horizon scans for future emerging trends. A scoring matrix calculates two figures: Each

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ANNUAL REPORT 2024

risk’s priority status with existing controls, and another figure with further measures taken. The following risks have been identified as the most significant to the charity:

Having identified these risks, the Board of Trustees and senior leadership team now have clear plans and procedures in place to the reduce the likelihood and impact of them.

Declarations of interest

All connected parties to the TSA are expected to make any potential declarations of interest as part of their ongoing activities with the charity. This includes TSA Trustees, the TSA team, our volunteers and supporters. Declarations are encouraged, in an open and transparent environment. For 2024, no shared potential conflicts were considered a major risk to the TSA or our community.

During TSA Board of Trustee Meetings, Trustees must make any new or existing potential declarations. Recent declarations include:

The TSA receives donations, grants and sponsorship from a wide range of individuals and groups. This is vital to our operations and our work in improving the lives of people with TSC. The TSA ensures that our income management is guided by industry best practice, such as the guidance set out by the Charity Commission, National Council for Voluntary Organisation (NCVO) and the Association of Medical Research Charities (AMRC).

A significant area of support for the TSA is from pharmaceutical companies focused on TSC. Industry grants and sponsorships provide no influence, or shift focus, on TSA activities in any shape or form. In-line with best practice, the TSA also seeks multi-organisational sponsorship and grants for projects of interest to pharmaceutical groups. Pharmaceutical support for the TSA accounted for only around 12% of overall TSA income in 2024.

Going concern

The TSA Board of Trustees has reviewed strategic and financial risks of the charity. This has included the present and future risks as identified in the risk register, the budget projections for 2025, and the future financial forecasts. Having considered these areas, the TSA Board of Trustees considers that there are sufficient reserves held as of 18 August 2025 to manage those risks effectively for a period of at least 12 months. Accordingly, they continue to adopt the ‘going concern’ basis in preparing this annual report and its related accounts.

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ANNUAL REPORT 2024

~~C~~ Monitoring our success and impact h

We strongly encourage the TSC community to provide formal and informal feedback to us about our work and impact. This includes through surveys, focus groups and all other discussions with us. Feedback is regularly analysed by the TSA Board of Trustees and senior leadership team, with this information used to assess our effectiveness and progress against our strategic plan.

It is especially important to us to understand what we can do better and what are the most pressing challenges for the TSC community, so that we can tailor our work and have the biggest impact possible. For example, previous feedback indicated that additional opportunities to meet with others face-to-face would be beneficial, which led us to adapt our focus for TSA events.

The TSA Board of Trustees and senior leadership team meet on a regular basis to monitor the current year’s business plan and planned goals against the wider strategy for 2025 – 2027. This helps to ensure that everything we do is aligned with our overarching aims and mission. To ensure that we are always working towards the aims and objectives of our latest strategy, a continually updated ‘Results Framework tracker’ is used to measure our work, including Key Performance Indicators (KPIs), potential barriers and means of achieving these aims.

For financial reporting, levels of liquidity, capital, interest and funds are continually monitored by TSA senior leadership and our investment partners. the TSA Treasurer and senior leadership team meet monthly to discuss the financial status of all funds as well as opportunities for future growth and investment to improve the lives of the TSC community.

In 2025, some of the things we plan to do are:

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ANNUAL REPORT 2024

FINANCIAL REPORT 2024

Independent auditor’s report

We have audited the financial statements of The Tuberous Sclerosis Association (the 'charity') for the year ended 31 December 2024 which comprise the Statement of financial activities, the Balance sheet, the Statement of cash flows and the related notes, including a summary of significant accounting policies. The financial reporting framework that has been applied in their preparation is applicable law and United Kingdom Accounting Standards, including Financial Reporting Standard 102 'The Financial Reporting Standard applicable in the UK and Republic of Ireland' (United Kingdom Generally Accepted Accounting Practice).

In our opinion, the financial statements:

Basis for opinion

We conducted our audit in accordance with International Standards on Auditing (UK) (ISAs (UK)) and applicable law. Our responsibilities under those standards are further described in the Auditors' responsibilities for the audit of the financial statements section of our report. We are independent of the Charity in accordance with the ethical requirements that are relevant to our audit of the financial statements in the United Kingdom, including the Financial Reporting Council's Ethical Standard, and we have fulfilled our other ethical responsibilities in accordance with these requirements. We believe that the audit evidence we have obtained is sufficient and appropriate to provide a basis for our opinion.

Conclusions relating to going concern

In auditing the financial statements, we have concluded that the Trustees' use of the going concern basis of accounting in the preparation of the financial statements is appropriate.

Based on the work we have performed, we have not identified any material uncertainties relating to events or conditions that, individually or collectively, may cast significant doubt on the charity's ability to continue as a going concern for a period of at least twelve months from when the financial statements are authorised for issue.

Our responsibilities and the responsibilities of the Trustees with respect to going concern are described in the relevant sections of this report.

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ANNUAL REPORT 2024

Other information

The other information comprises the information included in the Annual report other than the financial statements and our Auditors' report thereon. The Trustees are responsible for the other information contained within the Annual report. Our opinion on the financial statements does not cover the other information and, except to the extent otherwise explicitly stated in our report, we do not express any form of assurance conclusion thereon. Our responsibility is to read the other information and, in doing so, consider whether the other information is materially inconsistent with the financial statements or our knowledge obtained in the course of the audit, or otherwise appears to be materially misstated. If we identify such material inconsistencies or apparent material misstatements, we are required to determine whether this gives rise to a material misstatement in the financial statements themselves. If, based on the work we have performed, we conclude that there is a material misstatement of this other information, we are required to report that fact.

We have nothing to report in this regard.

Opinion on other matters prescribed by the Companies Act 2006

In our opinion, based on the work undertaken in the course of the audit:

Matters on which we are required to report by exception

In the light of our knowledge and understanding of the Charity and its environment obtained in the course of the audit, we have not identified material misstatements in the Trustees' report.

We have nothing to report in respect of the following matters in relation to which Companies Act 2006 requires us to report to you if, in our opinion:

Responsibilities of Trustees

As explained more fully in the Trustees' responsibilities statement, the Trustees (who are also the directors of the charitable company for the purposes of company law) are responsible for the preparation of the financial statements and for such internal control as the Trustees determine is necessary to enable the preparation of financial statements that are free from material misstatement, whether due to fraud or error.

In preparing the financial statements, the Trustees are responsible for assessing the Charity's ability to continue as a going concern, disclosing, as applicable, matters related to going concern and using the going concern basis of accounting unless the Trustees either intend to liquidate the Charity or to cease operations, or have no realistic alternative but to do so.

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ANNUAL REPORT 2024

Auditors' responsibilities for the audit of the financial statements

Our objectives are to obtain reasonable assurance about whether the financial statements as a whole are free from material misstatement, whether due to fraud or error, and to issue an Auditors' report that includes our opinion. Reasonable assurance is a high level of assurance but is not a guarantee that an audit conducted in accordance with ISAs (UK) will always detect a material misstatement when it exists. Misstatements can arise from fraud or error and are considered material if, individually or in the aggregate, they could reasonably be expected to influence the economic decisions of users taken on the basis of these financial statements.

Irregularities, including fraud, are instances of non-compliance with laws and regulations. We design procedures in line with our responsibilities, outlined above, to detect material misstatements in respect of irregularities, including fraud. The extent to which our procedures are capable of detecting irregularities, including fraud is detailed below:

Our audit procedures have reviewed for evidence of managment override, any ongoing legal cases, completeness of related party transactions, as well as on ongoing consideration of fraud and irregularities during the whole audit process.

Because of the inherent limitations of an audit, there is a risk that we will not detect all irregularities, including those leading to a material misstatement in the financial statements or non-compliance with regulation. This risk increases the more that compliance with a law or regulation is removed from the events and transactions reflected in the financial statements, as we will be less likely to become aware of instances of non-compliance. The risk is also greater regarding irregularities occurring due to fraud rather than error, as fraud involves intentional concealment, forgery, collusion, omission or misrepresentation.

A further description of our responsibilities for the audit of the financial statements is located on the Financial Reporting Council's website at: www.frc.org.uk/auditorsresponsibilities. This description forms part of our Auditors' report.

Other matters

Tuberous Sclerosis Association did not require an audit in the previous year. Therefore, the comparative figures are unaudited. Sufficient appropriate audit evidence that the opening balances do not contain misstatements that materially affect the current period’s financial statements has been obtained.

Use of our report

This report is made solely to the Charity's trustees, as a body, in accordance with Chapter 3 of Part 16 of the Companies Act 2006. Our audit work has been undertaken so that we might state to the Charity's trustees those matters we are required to state to them in an Auditors' report and for no other purpose. To the fullest extent permitted by law, we do not accept or assume responsibility to anyone other than the Charity and its trustees, as a body, for our audit work, for this report, or for the opinions we have formed.

Laura Waycott FCA (Senior Statutory auditor). For and on behalf of Griffin Accountancy Courtenay House

Pynes Hill Exeter EX2 5AZ Date: 26 September 2025 oP

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ANNUAL REPORT 2024 Statement of Financial Activities including income and expenditure account For the year ended 31 December 2024 Unr88trlctsd R8Strlctsd funds funds Total Unf8Strlctsd R6strtct6d funds funds As r88tat6d 2023 Total A8 r68tat8d Note 2024 2024 2024 2023 2023 Intomo from.. Donations and legacies Chariiabl8 aclivi1188 Investments 614.432 2,105 32.664 7.350 621,782 2.105 32.664 392.577 2,666 25.559 90.547 483,124 2,666 25,559 Total Incomo 649.201 7.350 656.551 420.802 90.547 511,349 Exp•ndltuM on: Raising fund8 Chadtsble ocllvllles 153,957 229,575 153.957 314,512 84.073 218,779 84,073 218,779 84,937 Total expondlturo 383,532 84,937 468.469 302,852 302,852 Nel gginsllloss8s1 on Inv8slm8nts 13 50,981 50,981 22,290 22,290 Not Incom8118xp8ndltur•l and movement In funds 316.650 177.5871 239.C63 140.240 80.547 230,787 Reconclllatlon of funds- Fund balanc88 811January 2024 969,951 90,547 I,￿0,498 829,711 829,711 Fund balancei at 31 Decomber 2024 1,286,601 12.960 1.299.561 969,951 90.547 1,060.498 $latement of financial a¢livilie$ In¢lude$ all g81n$ and Iw$e$ re¢ognl$ed In the ye8r. All in¢ome 8nd expendilure d8riv8 from continuing aclivili85. 37 1

ANNUAL REPORT 2024 Balance sheet As at 31 December 2024 2024 2023 As rest*ed Not88 Flxed assets Tangible asseis Invostmgnts 15 16 2,708 706.437 660,307 709,145 660,307 Cunnt a868ts D8btor8 Cash at b￿nk and in hand 17 24.766 594,532 169.873 249,8fA) 619,298 419,733 ¢r•dltor•'. amoynt• f8lllng du• wlthln one yegr 18 128,8821 119,5421 N•t ¢urr•nt ••••t• 590.416 400,191 Total 8sB8ts1osb curront Ilabllltlo 1,299,561 I,(￿0,498 Th• fund• ofth• ChHrfty Reslricled incon8 funds Unre$tri¢led funds 21 22 12,960 1,286.601 90,547 9,951 1.299.561 1,C60,498 The enlily was enlilled lo exernplion from audit under section 477 of the Companies Act 20C6. The membBr5 have ￿1 required ihe enlily lo obialn an audll th8 y8ar In quesllon In accordance wllh Secllon 476 of the Comp8n188 Acl 2006. However, an audll is r8quir8d In 8ccNd8nc8 wllh secllon 144 of the Charities Act 2011. Truste88 aCk￿wI8dge thelr r88ponslblllll8s for complylng wllh the r8qulr8m8nl$ of the Act ￿th resp8cI to accounting records and pr8paralion of financial sts18m&nls. financlal sla18ments have been prepared In 8¢¢ord8nce wllh the provl$lon$ 8p￿I¢8ble lo enlilies $ubje¢t to th8 small tompani8s r8gim8. financial slalements were approved by the Iru$tee$ Dn 26 September 2025. sinTh￿ Jamas ITr8asur8r, Tub8rous Sc￿ros1s Association) 38 1

ANNUAL REPORT 2024 Statement of cash flows For the year ended 31 December 2024 2024 2023 A6 r68tated Notes Cash fl¢)ws from operotlng octlvltles Ca8h g8n8ral&l fromllab80rt)8d byl OP8ralions 25 310.618 151.2311 Inv06tlng actlvfjtl8• Purchase of tsngible fixed assets Purchase of inveslrnents Prote￿8 from dlsposal of investrn8nl8 Inveslrnent incorne received 13.4611 1166.8991 171,750 32.664 1165,9291 170,619 25,559 N•t ¢8•h g•n•rot•d from Inv••tlng •¢tlvltl•• 34.054 30.249 Not cobh gonorated from flnanclng act￿lt￿l N•t In¢r••Mlld•¢r•81•1 In ¢••h •nd ¢••h •qulv•l•nt• 344.872 120.9821 Ca$h ¢a$h equ￿alentS al beglnnlng of y80r 249.860 270.842 C••h anil •qulv4l•nts it •nd of y•ir $94,532 249.880 39 1

ANNUAL REPORT 2024 Notes to the financial statements For the year ended 31 December 2024 untlng poll¢l Charfty Informatlon The Tuberous Scler05i5 A550oialion 15 a Gharity G(yDpany litnited by guarantee. incorporated in England and Wale5. The registered offjce 15 Cwrtenay House. Pyne5 Hill. Exelw. EX2 SAZ. 1.1 Accountlnq conventlon The financial 81al8m8n18 hav8 b88n pr8par8d Sn accNdance with th8 cha￿￿8 governlng document, the Compan188 Act 2006, th8 Charili&s and TnJsl88 Investment (Scollandl Act 2005, the Ch8riti8s A¢Lounts (Scotlandl Regulation5 2006, FRS 102 'The Financial Reporting Standard applicable in the UK and Republic of Ireland and the Charities SORP 'Accounling and Rewrb'ng by Charities.. Staletnenl of Recotnmended Practice applitAbl8 10 charili8s pr8paring ih8ir accounts In accordanc& wth th& Financi81 R&portyng St8ndard applicable in the UK and Repu￿1£ of Ireland IFRS 1021.. The Charity is a Putlic Benefit Enlily as defined by FRS 102. The flnancial sial8m8nls are pr&par8d In s18rllng, whlch Is th& fun¢tlon81 Currency of Ihg Charfty. mo￿tsry arrnunts in these financial statements are rounded lo the nearest £. The financial sta￿MentS have t)een propared under the hl$lcKIc81 ¢08t convenJon, Imodlfed to Include Ihe revaluati￿ of freehold properb'es and lo include investment properties and certain fi'n8na81 instruments al fair Val￿1. The principal accounting policies adopted ar? set out below. 1.2 Golng ¢on¢•rn At Ihe lim8 of approving th? financial slalements, the Irusl88s have 8 r88sonatde expectation that the Chedty has adequala rasource8 lo continu8 in operational 8xisl8nc8 lor the for8s?88bl8 future. Thus the trustees contlnuo 10 odopt tho golng ¢on¢ern bo91$ of a¢counllng In preparing the financial slatsmanls. 1.3 Ch4rftablo lund• Unreslricled lund8 8r8 aVaIlab￿ for use al th8 dlscr8Jon of th8 Iru81e88 In furth8r8nc8 of thdr ch8rf18b18 oblecb'ves. Restrlcled fund$ gre subject to speciflc condllions by donors or grantor$ as to how they rnay be used. Tho purposes and u888 of th8 reslrtcled fund8 are $81 out In th8 not88 to the fin8nd81 sl8t8menls. Endowrnent funds Sre subject lo specific conditions by donors that the capital must be maintalned by tho Charfly. 1.4 Incom• Income Is r8ccgnls8d when the Charity 1s18gally entitled lo it after any p8rforrnanc8 conditions h8V8 been mel, the amounts can be mea$ur&d reliably, and il 1$ prob8ble that In¢Dme will be re¢elved. Cash donati￿8 are recognised on recwpl. Other donations are recognised once the Charity has téen notified of the donation, unless pgrformanGe GDndiliDn5 require deferral of the dtnounl. InGome tax re¢overable In relation lo donations rec8iV8d under Gift or d8eds ol covenant is r8ccgnised 81 the b'm8 of the dOna￿"On. Lagacies ar8 recogni88d on r8C8lPtor oth8rwis8 if th? Charity h88 been notified of an impe￿Ing distribution, arTK)unt 15 known. 8nd rewpl 15 expeGted. If the 8rnount 15 not known. the legeGy is treated 85 conlingenl asset. Enli118m8nt to re88arch conf8r8nc8 incom8 Ss on rec8ipl of th8 bcoking f88 from the delegate. Investment income cornprises dividend5 and interest receivable for the year. Dividend5 on equity securitie5 ar8 recorded as r8v8nu8 on the ex-dividend dal8. Int8r8st Income Is recognis8d 8s Il accrues, taking into account the effectwe yield on the inve5trnenl. 40 1

ANNUAL REPORT 2024 Notes to the financial statements {continued) For the year ended 31 December 2024 Accountlng pollcl88 Icontlnuedl 1.5 Exp8ndltur8 Expenditure is recognised once there is a legal or conslruclive obligation lo transfer econotnic benefit lo a third party. it is probable that a transfer of oconotnic benefits will be required in setllemenl, and the amount of the obligation can be rnea5ured reliably. Grants ofFered subject lo conditions which have not been tnet at the year end date are noted as a cotntniltnenl bul not accrued a5 expenditure. Expenditure is classified by activity- The c05t5 of each activity are made up of the lolal of direct c0515 and shared costs. including support cos15 involved in undertaking each aclivily. Direct costs allribulable lo a single activity are allocaled directly lo that activity. Share(I c051s which contribute lo more than one activity and support costs which are not attribula￿e lo a single activity are apportioned between Ih05e activities on a basis consistent with Ihe use of resources. Central 51aff cos15 are allocated on the basis of lime spent. and depreciation charges are 811ocaled on the portion of the asset's Use. Amortisalion is recognised so as lo write off th? cost or valuation of assets 1855 their residual values over Ihoir u88ful Ilv8s on th8 followlng bas&$'. Oat8b888 costs Over estimated u88ful lrfe 1.6 Tanglbl• flx•d ••••t• Tangible fixed asse18 are initially m8asur8d al cost and subs8qu?nlly measured al cost or v81u8tlon, net of dapreciab.on and any impairm8nl losses. 08preciallon 18 r8cognls8d so as to wrll? off th8 cost or valuallon of assets18ss Ih8lr r8&dud v81ues over their usaful liv88 on the followlng bas88'. Flxtura& 8Th1 filliros Comwlers 25% on r8duc4ng b818nce 4 y8ar8 81r8lghl Iln8 The g￿1￿ or loss ￿nSIng on the di5wsal of an asset Is delwmined as the diffwence between the sale pr¢xeed$ aThfj th8 t%rylng valu8 of the 8ssel, 8nd18 recognl88d In th8 $1818m8nl of financI81 activllles. The company a ￿lCY not lo cawlalise assets with a cost bdow £250. 1.7 Flxod asset Investmonts FIx8da8881 Invesimenls are inlllally m88sured 81 Iran88cllon p￿(* excludlng tr8n88dlon costs, 8nd are sutIS8quenlly m8asured ai fair value al &ach reporting dale. Changes in fair value ere re¢oonl$ed In net incormllexpendilurel for the year. Transaction costs are expensed as incurred. 1.8 IMpaI￿O￿t of flxed At eash reporbng end dale. the Charity revitrws Ihtr ¢arrwng amounts of its Iongibltr and intangible assets lo delemine whether thBrB is any indi¢aiion thai those asset$ have $uffeTrd an imp4irment loss. Ir any su¢h indication exists. th8 r￿0Verable amount of the asset is estimated in order to determine the exlenl of the impairment1055 lif anyl 1.9 Cash and cash equl¥al8nt8 Cash an(1 cash equivalen15 include Gash in hand. deposi15 held al Gall with banks. other 5hort-term liquid inveslrnent5 with original maluritie5 of three tnonlhs or le55. and bank overdraft5. Bank overdraft5 are shown thin borrowing8 In curr8nl Iiabililies.

ANNUAL REPORT 2024 Notes to the financial statements {continued) For the year ended 31 December 2024 untlng pollGI Iconllnuedl 1.10 Flnonclal In¥trvments The Charity has 818cl8d to ap￿Y th8 provisions of S8clion 11 'B8sic Financial Instrument8, èfKJ Section 12 'Olh8r Financial Inslrum8nls I&su8s' of FRS 102 to 811 01 its financi81 inslrum8nls. Financi81 Instruments ar8 r8eogn188d in Ih8 Charity's balanc8 sh881 wh8n th8 Charity bec￿&S party lo th8 conlraclual provisions of lh8 inslrurnenl. Finanoal a55ets and liabilitie5 are off5el. with the nel atnounls p￿se￿Ie￿ in the financial 5talewenl5. wh8n U)8r8 18 818gally 8nforc8aN8 right lo $81 off th8 r8cognis8d amounts 8nd there is an intantyon to settle on 8 n8t ba818 u lo realis8 th8 asset 8nd 88tt18 th8 liability s1mult8n8ou￿y. B8sl¢ nn8ncl818ss6ts Basic financial a8s8ls. which Includ8 d8blN8 and cash and bank b8lanc8s, ar8 Ini11811y m888ured 81 transaction price includiry iransaclion c0515 and are subsequently carried al amortised cost using the effective interest method unles5 the a￿angement con51itule5 a financing Iransaclion. where the transaction is m8asur8d ai lh8 pr8s8nl valu8 of th& lulur8 r&cwpls dlscrAJnted 818 m8rkel r8te of inlere$l. FinanGial a$$els classified as receivable within one year are not amorb8ed. B•slc flnanclalllabllltle 88sic fina￿la1 liabilities, including cr?dilNs and bank loans are initially recognised al transaction price unless the arrawemeni consiilule$ a nnan¢ing Ir8n$a¢llon, whofo tho debt Instrument 1$ m&a$ur&d al the present value of the future payrnenls discounted al a math81 ral? of interest. Flnancial liabilities cl888ifi8d as p8y8bl8 thin year are not arn0rti￿d. 08bt InslruThnl8 ar8 5ub88qu8nlly carrf8d al amortlsed cost, uslng the 8ffectlv8 interest rate m8lhc¥J. Tr8d8 creditors ara obligab￿S lo pay for goods or $8rvic8s th81 h8ve been acqulfed In the ordln8ry course of operations from suppliers. Amount$ payoblo aro cla$$ified as ¢urrenl liabilities Ir payment is tlue wllhin on year or18ss. If not. Ih8y 8r8 pr8S8nl8d as non-curr8nl Iiabilili8s. Trad8 creditors 8re recognised inllièlly 81 Iransaclion pric8 and subs8qU8nlly m8asured 818mNbsed cost using tha effaclive Inlerasl malhod. D•recognltlon of Ilnan¢lal Ilablllths Financial liabilitie5 are derecogni5ed when the Chqrily s conlrqclual obligatlOn5 explre or are discharged or CO￿8118d. 1.11 Employee benefits The c051 of any unused hol￿￿Y enbuemenl Is recognised in the pertod in which the ￿ployee'S 5ervice5 are received. Teminalion benefits are recognise(J imrne(Jialely as an expense when the Charity Is demonstrably ¢ommi118d lo termina18 th8 em￿oyM8nI ol an em￿0ye￿ or lo provid&18rmlnalion bènéfits. 1.12 Retlr8m8nt beneflt Payments lo defined contribut￿n r?lir?m8nl benefit schem* are charged as an expense as they fall due. 42 1

ANNUAL REPORT 2024 Notes to the financial statements {continued) For the year ended 31 December 2024 Crltlcal accountlng 88tlmat88 andludg8m8Thts In the ap￿1¢a￿On of th8 Charity's accounting polici8s. th8 Irusl88s ar8 required lo mak8 judg8ments. eslimales arKJ assumptions about the catrying amount of assets an(1 liabilitie5 that are not readily apparent frotn olher Sourc88. Th8 8stymal88 and associ818d assumpbons ar8 b8S8d on hisloncal exp&ri8nc8 8nd other factors that are eonsid8r8d lo b8 r818vanl. Actual r8sulls may differ from th8S8 8Stim8tes. The estimates 8nd underfying assumptions are reviewed on an ongoing basis Revision5 to accounting eslitnate5 are r￿niSed in the period in which lh8 881ima18 18 r8vis8d wh8r8 th8 r8vision aff8cls only th81 p8ncK1, or In the ￿rirAl of the revision and futur8 P8rK)d8 wher8 ll)8 r8Vl8ion aff&cts both current 8nd future P8nods. Income from donatlon8 and109acl85 Unr•$trlcted fund¥ Rostrlcted fund$ Totsl Unr••trlctod Restrlctod fund• fund• A• r•st8tèd 2023 Totsl A• r•$t)l•d 2023 2024 2024 2024 2023 Donatltsns and gffts Legacles Gmnts 277,373 198,988 140,073 277.373 196,986 147.423 155.603 147,000 89,974 90,547 246,150 147,￿0 89,974 7,350 614.432 7.350 621.782 392.577 90.547 483,124 Income from charlt4ble actlvlt40 UnM•lrlct•d fund 2024 Unr6•trlc¢•d lund8 2023 other tradlng a¢tlvltle8 Chrislrnas cards and oiher sal85 1,760 2,225 Tralnlng InGom• Training i￿￿[n9 345 441 2,105 2,666 43 1

ANNUAL REPORT 2024 Notes to the financial statements {continued) For the year ended 31 December 2024 Income from Inv8stm8nts Unr68trlct8d Unr•strlct6d funds funds 2024 2023 Incorne frorn listed inveslrnenls Inl8r881 r8C8ivaN8 15.969 16,695 18.302 7,257 32,664 25,559 Expendltyra on r•l•lng fund• Unr••lrl¢t•d UnrMtrl¢l•d fundo lund8 2024 2023 Fundr•l•lng •nd publl¢lty Seeking donalims. grants and18gacl88 stgging lundraisiry events Other fundral8lng co818 staff G0515 Depreciglion ond Impo1m￿nI Support co&ts 5,928 6.206 14,532 110.199 405 11,837 2,054 82 66,282 7,417 149,105 75,815 Inv8Stm8nt man8gem8nt 4.852 8,258 Tot81 costs 153,957 84,073 44 1

ANNUAL REPORT 2024 Notes to the financial statements {continued) For the year ended 31 December 2024 Expondltura on ch8rftabl8 actfvltlos R888arch Famlly Car and Support 2024 Total R088arch Famlly Care and Support 2023 Total 2024 2024 2023 2023 Dlrect costs Depr8tialion8nd impairment Subscriplion8 Travel & CornmunKalions IT & GDPR S8NIce8 Marketing & Media Prof8sslonal fees Scan Blg Day Tralning Outlook events Consultancy 174 819 887 915 73 174 1.643 69 10.068 73 348 2.462 956 10.983 146 871 2,824 3.695 500 10,332 7,985 2,014 1,726 500 10,332 7,985 4,243 2,301 2.640 2.640 11,073 8.144 2,$80 5.600 10,954 7.603 1,935 5.600 541 2,229 575 8.813 39.019 45.832 3,678 25,381 29,057 Gmni funding of act￿11￿$ ($00 note 81 36.934 4.wo 41.834 124.5921 9,300 115,2921 Share of support and gov•marbce costs110o nots 91 Supporl 104.378 112.171 Govornance 5.136 5.161 216,$49 10.297 88,117 2.053 112,791 2.053 2￿,908 4,1 153.261 161.251 314.512 69.254 149,525 218,779 Anaty&l• by fund Unreslricled funds Restric18d fund8 74.974 78,287 154.601 6,650 229.575 84,937 69.254 149,525 218,779 153.261 161.251 314.512 69.254 149,525 218,779 45 1

ANNUAL REPORT 2024 Notes to the financial statements {continued) For the year ended 31 December 2024 Grants payabl ResoarGh Fornlly Core and Support 2024 Total ResearGh Famlly Care and Support 2023 Tolal 2024 2024 2023 2023 Grants to Instltutlon8- Unlvtrarty ol Bnstol NHS Foundation Tru5t- Randomised Conirolw Trk41 ofACT in TSC 6,171 0,171 Unlveryity Colleoe LoThdDTh- The TSCI and TSC2 Vanalion D8labage8 12261 12261 Instllute of mod￿11 GeneliL¥. CDrdlff 11,3701 11,3701 Re888r¢h Dep8rtrnenl ol Ger11￿. Unlver5ity College LO￿ Epilepsy R8804rch In8lllule UK 27,617 27,617 122,4831 122,4831 Unlverbity ol manc￿0￿18r, Facullyof Llfe Sclences Whiiehe8d Insiituie C8rdlfl Unw8rty C8rdlff Unw8rty Inslllule of PsychlBlry Psycho109y C8rdiff Unw6rty Othtr 12241 11851 16251 16201 1671 1851 4.932 12241 162SI 16201 1671 1651 4.932 36.934 36.934 124.5921 124,5921 Grants lo Indlvidual$ 4,WO 4,WO 9,300 9,300 36.934 4.wo 41.834 124,5921 9,300 115.2921 Researth Grants are award8d on an annual basis and are only r8n8w8d after an annual review. In 8ccordanc8 with IhB SORP. gnly the first year of the grant is GhHrged again51 the relevdnl fund up to the Gomtnitted amount of tha grant. Negatwe balances repres8nl ihe undaimed 81?m8nls of grants wevicusly awarded, which have now expired 46 1

ANNUAL REPORT 2024 Notes to the financial statements {continued) For the year ended 31 December 2024 SuP￿rt Costs allocated to actlvltles 2024 2023 Staff cost5 Staff Irainir Accomrnodation and ri)orn hire Travel & CornmunKaloin5 Subscriplions Accountancy Sundr188 IT and GDPR 8eryices Insuranc8 Conferer Ch18f 8X8cuVve exp8n$e& GoVernar￿8 c05t5 198.065 177.220 299 15,1461 17261 5,503 5,040 5,293 13,963 5,540 1,339 927 1,7 5.460 5,560 12.373 2,693 1,608 16.223 6,160 244,609 214,485 An•ty••d ￿¢￿￿•￿. Fundraising Re5e8rth Famlly Care and Support 17,763 109,514 117.332 9,471 90,170 114,844 244.608 214,485 10 Not movomont In fund# 2024 2023 The r￿t nK>v8menl In fund818 stsled 8ft8r ch8rglngllcredlJngl.' Fees payable lo the chsrity's oudllor.. For the audil12023 Independent Examinat￿} of the charity's rinancial staternenls For other assurance services oep￿clatkjn of owned lanGible fixed assets 6.900 1,800 1,920 753 11 Tru•t••• None of the Iru$lee$ lor any ￿r$on$ ¢onn&¢led wth thtrml re¢eivtrd any remuneolion or benefits from the Charity during th8 year. No Irusl88 8XP8ns8S W8r8 incurr8d during the ye8r12023.. £Nill. 12 Employ888 Th8 av8rag8 monknly number of 8mVoy8e8 during yearw88.' 2024 2023 Fundraising Family Supportand Communicalbns Re5earth Tot41 47 1

ANNUAL REPORT 2024 Notes to the financial statements {continued) For the year ended 31 December 2024 12 Employ888 Icontlnuedl Employmant Costs 2024 2023 Wyges SH￿rieS Social $8curiIy c08ts Other pen￿On costs 269.360 21,961 16.943 216,0 16,718 10.688 308.264 243,502 Th8r8 w8r8 no 8mploye88 WtK)$8 8nnu81 r8mun8r81Ion w8$ more than £60,0(MJ. Remuneratlon of key manag8m8llt P8rnoThno1 The remuneration of key rnanagernenl personnel was as follows.. 2024 2023 Aggr8g818 compensat 116,600 105,CQO 13 04ln• •nd lo•••• on Inv••tm•nti Unr•¥trlrt8d Unro•trl¢t•d funds lund8 2024 2023 G81nsllloss881 art8lng on.. Rev8luatth of investments 50.981 22,290 14 Taxatlon The charily15 8X8rnpI frcrn laxalDn on ils activiti￿ because all its inc￿8 is aprlied charitable purpos8& 15 Intsnglbl• fix•d ••••ts ¢orry>u¢• Co•t At 1 January 2024 an(131 December 2024 19,624 Arnortlsotlon and Irnpalrment At 1 January 2024 31 Decemt)er 2024 19,624 Carrylng amount At 31 D8C8mb8r 2024 At 31 D8C8mb8r 2024 48 1

ANNUAL REPORT 2024 Notes to the financial statements {continued) For the year ended 31 December 2024 16 T8nglbl8 flxed 8888t8 Flxturos and Complrtors Total C06t At 1 January 2024 Additions 1.135 1.135 3,461 3,461 At 31 December 2024 1,135 3,461 4,596 Doproclatlon and ImpAlnn8nt At 1 J8nuary 2024 Oeprociallon Charged In the year 1,135 1,135 753 753 At 31 December 2024 1,135 753 1,888 Carrylng amount At 31 December 2024 2,708 2,708 49 1

ANNUAL REPORT 2024 Notes to the financial statements {continued) For the year ended 31 December 2024 17 Flxed 8888t Inv8stm8nt8 Llsted Inve5tment¥ Total Cost orvaluatlon At 1 January 2024 Additions Valuation Ch￿ng&S Dispos818 660,307 334.829 50.981 1339.6801 660,307 334,829 50,981 1339.6801 At 31 D8c8mbor 2024 7C6.437 706,437 Carrylng amount At 31 December 2024 7￿,437 70fj,437 At 31 Dec8mb8r 2023 680.307 660,307 Inve8lmenl8 at fair valu8 conpri88'. 2024 Global B¢)nd$ UK Bonds Oevelopad A8Lq ax. Japan Equlll85 ooveloped Europe ox. UK Equilios Emerging Equi1188 Global Equities Japan Equlll88 Norih Arnerican Equities UK Equities Absolule Relum Global Prop8rty Gold Olh8rAllornatbve$ Cash 89,594 44,6CQ 44,579 30,114 7,250 41,244 21,233 240,225 133,963 7,068 16,974 13,352 20,902 15,339 706,437 18 Oebtorn 2024 2023 Amounts falllng due wlthln ￿r. Olh8rdeblors Prepayrnenls 8nd inwme 3.415 21.351 5.471 164.402 24,766 169,873 49 1

ANNUAL REPORT 2024 Notes to the financial statements {continued) For the year ended 31 December 2024 19 Cr8dltor8'. amounts falllng du8 wlthlTh one year 2024 2023 As reststed ott￿r taxation and seujnty Trad8 U8diiors Other creditors Accrua18 and d8f8rr8d income 6,091 3,56B 1.999 17,224 5,263 8,238 1.482 4,559 28.882 19.542 20 Rotlrement bonoflt sch8m85 2024 2023 D•fln•d ¢ontrlbutlon •¢h•m•• Charge to profll or1088 In respect of deflned conirlbuUDn schemes 16,943 10,688 The Charlly oporaies a deflned ¢oniribullon pen$lDn scheme f(K 011 qualifylng employees. The 088818 of the schema are held 8eparal8ly from thos8 of the Charity in an ind?p?nd8nlly adrninislered fund. At 31$t Do¢omber 2024 £1,99912023. £1.4281 wo9 POyobl& lo the fund anLI Is Snduded ￿thIn ¢redilors, 21 R•otrlrtod fund• Tho ro$trlcled fund$ of the ¢harily C￿np￿S￿ the unexpendad bo1once$ of donauons and grants ￿ld on iru$t sublecl to specific C￿dItIonS by donors 88 to how they may b8 u88d. At 1 January 2024 Incomlng R•&ourc •xp•nd•d At31 D•cOm￿r 2024 Research Sponwed events Support activi1188 46,047 44,500 133,7871 I44.5￿) 16,6501 12,260 7,350 700 90,547 7,350 184,9371 12,960 Provlous year- At 1 JJnu#ry 2023 InGornlny RMourro$ rosources expended At31 DecembBr 2023 Res8arth SpDnsored events 46.047 44.5 46,047 44.500 ,547 90,547 49 1

ANNUAL REPORT 2024 Notes to the financial statements {continued) For the year ended 31 December 2024 21 Rg¥trlthd fund¥ Icontlnuedl A description of th8 purpos8 of th8 r8slricl8d funds is given b810w'. Research- to 8naN8. or dir8clly fund, r8S8arch into 811 aspects of TSC from 8 r8ng8 of researc￿r8 and in8titulion8. Including, bul not limil8d lo.. Diagnosis, Ir8atm&nl and man8g&m8nt of TSC., everyday hallenges of TSC.- and living well with TSC Sponsored event5.' A wide range of even15. Wlrtual and in-pwson. for the TSC comtnunily. This include5 bul not limited.. Peo￿8 directly living with TSC.. carer5 and lowed ones of people with TSC.. arKI profe55ionals on the condition, such a5 clinical. health. education and s￿181 care professionals Support activitie5.. Action5 and kyojecls relale(I lo supporting people affected by TSC. This includ￿1 but not limited to.. People and faTnilie5 newly diagnosed with TSC.. emotional and wellbeing support.. certified rnedical inforrnation about TSC.. ongoing support for people's daily lives wlh TSC 22 Unrestrlctod funds Th8 unr88ldd8d funds of th& charfly comprls8 th8 un8xp8nd8d b81anr*s ofdon8Jons 8nd or8nls whlch are not subJ"8cI 10 $P8clfic conditions by donors and grantors as to how Ih&y may bé used. Thèsé includ8 designated funds which have been sel asi(Je out ol unreslricled funds by the Iruslees for Spe￿fiC purpose8. At 1 J•nu•ry 2024 In¢•mlng R••¢ur¢•• r•sour¢ •xp6nd•d Galns •nd At31 Docembor 2024 De$lonated E￿I￿￿ent Fu￿1 Genaral fund8 567.820 402.131 567,820 718,781 649,201 1383.5321 50,981 989.gS1 649,201 1383,5321 50,981 1,286,e01 Pr•vloui year: At 1 January 2023 Incomln9 Ro8oiirco5 rosoiirc88 oxp8nded Galns and 108808 At31 Docombar 2023 A• restatod AS rojtated A• r••tat8d Deyignaled EndowTmnl Fund General funds 529.711 300,000 18.302 402,5 12,4831 1300,3691 22,29) 567,820 402,131 829.711 420.802 1302,8521 22,2WJ 969,951 23 Anaty618 of net a868ts be￿e8n fund• Unrestrlcted fuTrd8 2024 Ro¥trlGtsd fund8 2024 Tolal 2024 At 31 D8cemb8r 2024.. Taryiwe a55ets Investmen18 Current a888lsllllabiliti8sl 2,708 706.437 577,456 2,708 7Cfj,437 5W,416 12,960 1,286,601 12,960 1,299,561 50 1

ANNUAL REPORT 2024 Notes to the financial statements {continued) For the year ended 31 December 2024 23 Anatysl8 of nat a888ts be￿88n funds Iconllnuedl Unr8strlcted fund8 2023 A8 rostatod Restrlcted funds 2023 Rostrl¢ted fund8 2023 As r08tat8d At 31 D8cembar 2023.. Investment5 660,307 309.644 660,307 400,191 9).547 969,951 ,547 I,(￿0,498 24 Rolatod party tran8actlons Theffj were no dleclo$8bb relat￿ p8rty transa¢Uon8 durtng the year12023. none). 26 Cash g8n8ratsd fromllab•othd by) op8ratlorb• 2024 2023 Al ro•tated Surplu$ for the yoar 239,083 230,787 Adlu•tm8nti for: Inve5trnenl incorne relwnised in statement of finandal acu￿￿0$ Falr value galns and Ioss8s on bnv88lm8nls Oepreciation and impairment of tangible fixed qss•is 132.6641 150.9811 753 125,5591 I22,2￿) Movomonts In worklng cqpltal- oecr8aS￿1lncre8$@I in d8blor8 Increaselldecrea8el in creditors 145,107 9,340 1166,4871 167,6821 Cash generated from11absort￿d by) op8ratloTh• 310,618 151,2311 26 An¥ly•l• of ¢h•ng•• In n•t fund• The Charity had no material debt during the year. 27 Prfor yearadlu8tment The following prior y8ar adiuslm8nls hav8 bean mad8'. - An accrual for £147,000 of legacy incotne - A reversal of an accrued grant dispersal of Q2.483 - A £2,721 &liustm8nt lo agr88 y8ar*nd cash at bank ngur8 The allocation of Some of the c05t5 was reviewed and amended during the year. A5 such. there hgs bee some r8allocab.on of c0818 rx)mpar8d to the 2023 puNi8hed accounts, howev8r thw8 has b88n no chang8 to the overall result in respect of thi5.

ANNUAL REPORT 2024 Notes to the financial statements {continued) For the year ended 31 December 2024 28 Prlor perlod adlustsnent Iconllnuedl Changes to the balan￿ sheet At DoGember 2023 A8 Wovlously Adlu5tmont roportod r8statod Current assets D8blor8 du8 Mlhin on8 year Bank and cash Crodltor& due wlthln on• yaar Other creditors 22,873 247.139 147.0 2,721 169,873 249,860 136,7621 22.483 114,2791 Net as8et5 888.294 172.204 1.060,498 Incom• fund• Resiricled funds Unrestrfcl&J 90,547 797,747 90,547 969,951 172,204 Totsl •qulty 888.294 172.204 1,060,498 Ch•ng•1 to th• proflt thnd lo•1 i¢¢ount P•rlod endod Dorornber 2023 A8 k¥ovIou8ly AdJu¥tm•nt reported r•stètod thnallons and I9￿cleS Inve8lm8nts 335,905 23,057 147.219 2,502 483,124 25,559 ¢h8dt8No 8etbvbl 241.262 122.4831 218.779 Net rroVe￿nI In fur￿$ 58.583 172.204 230,787 52 1

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Tuberous Sclerosis Association is a registered charity in England and Wales (1039549) and Scotland (SC042780), and is a company limited by guarantee registered in England and Wales (no. 2900107).