## **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: 

- Settle the terms of payment with suppliers when agreeing the terms of each transaction 

- Ensure that suppliers are made aware of the terms of payment by inclusion of the relevant terms in contracts 

- Pay in accordance with the company's contractual and other legal obligations 

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: 

- Select suitable accounting policies and then apply them consistently 

- Observe the methods and principles of the Charities SORP (FRS 102) 

- Make judgements and accounting estimates that are reasonable and prudent 

- State whether applicable UK Accounting Standards (FRS 102) have been followed, subject to any material departures disclosed and explained in the financial statements 

- Prepare the financial statements on the going concern basis unless it is inappropriate to presume that the Charity will continue in business. 

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: 

- So far as that Trustee is aware, there is no relevant audit information of which the charity's auditors are unaware, and 

- That Trustee has taken all the steps that ought to have been taken as a Trustee in order to be aware of any relevant audit information and to establish that the charity's auditors are aware of that information 

## **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<br>Research and advocacy<br>Fundraising|17<br>19<br>24|
|**Money matters**<br>How we spent funds in 2024<br>Financial overview for 2024|**26**<br>26<br>27|
|Reserves policy<br>Investment policy<br>**Our financial plans for the new**|28<br>29<br>**30**|
|**strategic period**<br>Endowment-like funds for ongoing|31|
|activities explained||
|**Governance and operations**|**32**|
|Risk management|32|
|Risk register<br>Monitoring our success and impact|32<br>34|
|**Financial report 2024**|**35**|



**Legal and admin information** Hymn 

## Trustees 

- Frances Elmslie • Stacey Bissell 

- • Simon James (appointed • Annemarie Cotton November • 2024) 

- Sanjay Sethi 

   - Maxine Smeaton (appointed November 2024) 

- Chris Kingswood 

- Jane Rogers 

- Martin Short 

- Secretaries: Luke Langlands, Dr Pooja Takhar 

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: 

- Support individuals affected by TSC, together with their families or carers 

- Encourage and support research into the causes and management of TSC 

- Provide education, publicity and information to promote awareness of the condition 

We do this through: 

- **Support and advocacy** . Including a dedicated support line, up-to date information and annual events 

- **Research.** Funding world-class research all aspects of the causes, management and treatment of TSC 

- **Campaigns and advocacy** . Influencing public policy and awareness to ensure that people with TSC get the support they deserve 

- **Professional development** . Expanding knowledge and expertise of TSC in health, social care and education 

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: 

- Offering more opportunities than ever before for the TSC community to come together, both virtually and in-person 

- Being a key voice in ensuring equal and fair access to new TSC medicines across the UK 

- A new and exciting way to fund TSC research, opening more doors for new researchers to start their journey in unlocking new TSC discoveries 

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: 

- Sanjay Sethi (Vice-Chair until November 2024. Investment manager) 

- Dr Chris Kingswood (Consultant nephrologist) 

- Jane Rogers (Nurse) 

**Simon James** 

- Rev. Martin Short (Retired) 

- Dr Stacey Bissell (appointed November 2024. TSC researcher) 

- Maxine Smeaton (appointed November 2024. Charity consultant) 

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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## **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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**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: 

- Discuss the Accounts of the Association for the year ended 31 December 2024 and the accompanying Reports of the Trustees and Auditors 

- Elect and re-elect members of the TSA Board of Trustees 

- Appoint an Independent Examiner until the conclusion of the next AGM in 2026 

- Authorise the Trustees to determine the remuneration of the Independent Examiners 

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. 

**11 |** 



**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: 

- **Advocacy and awareness** . Campaign for TSC to be a higher priority in the health, social care and education sectors. Improve specialist care access, treatments, and therapies - especially for TSCAssociated Neuropsychiatric Disorders (TAND) and through championing TSC clinics 

- **Research** . Make more world-class TSC research possible. Invest in studies that strengthen evidence-based tools for daily management of TSC. Make collaboration a key focus, with the TSC community influencing our research priorities 

- **Support and information** . Ensure that everyone affected by TSC can receive support, and creating information on all aspects of TSC, in a range of formats and platforms. Provide ways for the TSC community to learn, connect, and share together, both virtually and in-person 

- **Sustainability** . Strong financial foundations are central to everything. Make the TSA resilient and adaptable, so we can be here in the future. Refine our fundraising approach, to secure reliable income across a wider range of sources 

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. 

**13 |** 



**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 

4. 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.** 

- TSA Support Fund user 

## **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. 

**15 |** 



## **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. 

- **TSA events are well** 

- **organised and give the** 

- **opportunity to meet other people with TSC and be** 

- **part of a community that support each other** - TSA event attendee 

**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:** 

- Achieve re-accreditation of the TSA Support Line with the Helplines Partnership, a membership body that evaluates support services for their level of quality 

- Expand the TSA Support Fund so that it’s easier to apply for and is more impactful. This is in direct response to the TSC community facing greater ongoing financial challenges 

- Begin to update our TSA Welcome Packs to include more materials, plus additional materials on how to explain TSC to children 

- Start work on relaunching our website so it’s easier to use and more fitting of the TSA and TSC community needs 

- Expand and improve our range of face-to-face events, including more opportunities for people affected by TSC to come together locally 

- Launch a pilot programme of more local TSC events, starting with a range of regional gettogethers and family days across Wales 

**16 |** 



**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: 

- 44 people attended our annual face-to-face TSC RDCN meeting 

- National virtual multidisciplinary team (MDT) meetings were launched for the first time allowing the clinicians to discuss complex cases with other experts 

- Our annual TSC education session, as part of the TSC RDCN, was successful in allowing healthcare professionals to learn more about TSC 

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. 

**17 |** 



**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!** 

- Teacher who completed TSA training course 

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

- Host a face-to-face TSC nurse specialists meeting 

- Once again be a key partner in updating the UK clinical guidelines for TSC, ensuring greater equality in TSC care 

- Create a more holistic support package for people with TSC, by encouraging TSC clinics to signpost to the TSC Support Line 

- Launch a CPD course for medical professionals unfamiliar with TSC, so that they can better care for people with the condition 

**18 |** 



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



**19 |** 



## **ANNUAL REPORT 2024** 

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



**20 |** 



## **ANNUAL REPORT 2024** 

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

- Reviewing researcher project proposals to receive major funding to ensure that the work was impactful and meaningful to people affected by TSC 

- Providing feedback on clinical trial protocols and documentation 

- Sharing their lived experience of TSC with UK regulatory bodies during campaigns for new TSC-related medicines 

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. 

**21 |** 



## **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: 

- Fenfluramine (Fintepla), to treat seizures in Lennox-Gastaut syndrome, a condition that some people with TSC also have 

- Topical sirolimus cream (Hyftor), for 

- TSC-related facial angiofibromas (bumps and marks on the face caused by TSC) 

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: 

- The UK Rare Disease Forum, supported by the Department of Health and Social Care. This provides meaningful discussions 

**Dr Elaine Dunlop (TSC researcher)** 

- and collaboration across everyone in the rare disease community, such as the TSA and other rare condition charities 

- The Specialised Healthcare Alliance (SHCA), chaired by Lord Sharkey. In the Alliance, we added to Government and NHS consultations on specialised care for rare conditions. This helps the TSA to share public policy in the interests of those with TSC 

- Attending Rare Disease Day 2024 events. One was hosted in Westminster by Liz Twist MP, Chair of the APPG on Rare, Genetic and Undiagnosed Conditions. The Scotland Rare Disease Day 2024 reception took place at the Institute of Genetics and Cancer, Edinburgh 

- Attending a Patient Advisory Group meeting by Public Policy Projects, as part of their Rare Disease programme. The meeting focused on the effective delivery of treatment for those living with, and those caring for, rare and ultra-rare conditions 

**22 |** 



## **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: 

- Advocating at the British Association of Dermatology (BAD), and the Dermatology Council, for a better understanding and management of TSC-associated facial angiofibromas and other skin conditions related to TSC 

- At the Neurology Transformation event, we were invited to speak to a group of commissioners, clinicians and Highly Specialised services at NHS England about the NHS TSC RDCN, as we are viewed as having an exemplary model 

- When medical research agency Adelphi held their annual all-team meeting to better understand the challenges faced by small charities, the TSA was one of the main guests 

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

- Have a central role in the development of new clinical guidelines for TSC, ensuring that diagnosis, care and management of TSC is better and more equal across the UK 

- Connect with likeminded organisations on key issues that affect the TSC community, such as disability and social rights charities 

- Continue to fund a wide range of TSC-related research, including special funding for early career researchers so they can kickstart a lifelong love of making the next big TSC discovery that will change lives forever 

**23 |** 



**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:** 

- Further increase our areas in corporate giving, such as being selected as Charity of the Year more often 

- Widen opportunities for the TSC community to be involved in challenge and DIY fundraising 

- Have a greater focus on trusts and foundations, made possible with much clearer targets and projects across all areas of the charity 

**24 |** 



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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,<br>Fundraising information and<br>33% events<br>35%<br>**----- End of picture text -----**<br>


**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: 

- **£567,820** in designated funds, which are expected to be largely spent down in the immediate future years 

- **£12,960** in restricted funds 

- **£718,781** in non-designated funds, with a clear plan now in place to designate and maximise these funds for our charitable activities from 2025 onwards (see **page 31** ) 

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: 

- Fund or co-fund out of capital, even at short notice, major medical research projects determined by Trustees and the TSC Research Volunteer Network as crucial to improving TSC care 

- Fund charitable activities out of investment income, helping to secure the future of the charity and to provide continuing support to the TSC community 

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. 

**27 |** 



**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 event was fabulous and very informative.** Py 

- - Teacher who completed TSA training course 

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

- TSA Support Line user 

**28 |** 



**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. 

**29 |** 



**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: 

- **Non-designated funds (free reserves) (£214,000)** . Equivalent to approximately 6 months running costs. At a sufficient level agreed by trustees, forming our reserves so we are financially stable and resilient, and to cover potential wind-up costs. These funds can be used at the discretion of the Board of Trustees towards our charitable aims and objectives 

- **Designated funds (£135,000)** . For major projects in our strategic plan for 2025 – 2027, with the allocation reflecting the business plan for the year. More details shared below 

- **Restricted funds (£58,200)** . For major projects within our latest strategic plan for 2025 – 2027, that we have gratefully received restricted funding to undertake 

- **‘Endowment-like’ funds for vital ongoing activities (£920,000)** . Providing some of the services and projects in our latest strategic plan that unlikely to receive funding elsewhere. ‘Endowment-like’ means we give a commitment to sensibly invest this fund so that the interest (income) can be used to improve lives in the TSC community 

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: 

- **Major TSC research projects** 

   - ⚬ All research funding decisions are made in partnership with the TSC Research Committee and the TSA Research Volunteer Network (ensuring patient and public involvement and engagement) 

- **A new TSA website** 

   - ⚬ The existing website is now out of date and requires a much-needed update to ensure that we continue to have an accessible and impactful resource 

- **TSA community events, including regional peer-support opportunities** 

   - ⚬ To ensures that both Outlook and Big Day events can take place in 2025, with both being significant costs to the TSA 

   - ⚬ A further pilot of regional peer-led events, allowing people to connect more often 

- **TSC medical professional events and resources** 

   - ⚬ These events drive best practice in TSC care and management forward, providing specialist and non-specialist clinicians the opportunity to come together to discuss TSC 

   - ⚬ Specialist CPD-accredited medical training for clinicians less familiar with TSC 

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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: 

- **TSA seedcorn grant round** 

   - ⚬ Many areas of TSC research are undervalued and underfunded. Thanks to this fund, we can unlock research into areas of TSC unlikely to be funded by larger organisations 

   - ⚬ This funds up to around 4 projects per year , helping us to progress our understanding of TSC in new and important ways 

   - ⚬ Projects are assessed for suitability by the TSA Research Volunteer Committee 

- **TSA benevolent grants** 

   - ⚬ TSC is a devastating condition that impacts all areas of daily life for individuals and their families, including significant financial poverty 

   - ⚬ The TSA Support Fund offers small but vital financial grants to people in the TSC community who are in financial hardship. The grants support a wide range of areas, from a new dishwasher to respite breaks. Around 30 grants can be provided every year 

   - ⚬ TSA travel bursaries give people the chance to attend TSA events that they otherwise could not afford, giving people an important opportunity to connect with others in the TSC community. The fund enables up to 15 grants every year 

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: 

- Charity reserves falling to below three months, as this may risk the charity’s liquidity or ability to wind down if needed 

- A significant opportunity to progress the charity’s mission and values against our current strategy, such as vital research project that could change the course of TSC and unlikely to be funded elsewhere, or a very noteworthy support and information project 

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. 

**31 |** 



**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: 

- Reviewing and approving a business plan and accompanying budget each year 

- Monitoring financial performance against the planned budget through regular finance reports which are scrutinised at each Board meeting 

- Approving unbudgeted expenditure in line with the Board-approved scheme of delegation 

- Regularly reviewing a three-year forecast to ensure that they are aware of the longer-term financial sustainability for the charity 

- Overseeing the preparation of the statutory Annual Report and Accounts, ensuring compliance with accounting standards and the legal requirements 

- Having responsibility for appointing and overseeing the external finance provider, independent examination and audit function 

- Monitoring and reviewing the performance of the investment portfolio and reviewing and reappointing investment managers as appropriate 

- Oversight of financial processes and policies 

## **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 

**32 |** 



**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: 

- A Board of Trustees that lacks relevant skills or commitments. The TSA’s policies in recruitment, training and succession planning protects against this risk 

- Failure to achieve our financial plans. Stringent and ongoing budgets and forecasting helps to avoid this risk, as does proactive work to diversify income and monitor reserves 

- Poor services outcomes. This would jeopardise us meeting our charitable objectives. Clarity in goals, a strategic plan and proactive support of the TSA team with training and growth opportunities reduces this risk 

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: 

- Engagement with industry groups 

- Involvement in a research steering group with an interest in TSC 

- Sitting on an advisory panel for a TSC-focused clinical trial 

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. 

**33 |** 



**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:** 

- Launch a special ‘TSA Voices’ feedback group, where people in the group will be asked to share their experiences or thoughts on specific projects or ideas that we have 

- Introduce more ambitious feedback mechanisms, to tell us what we’re doing well and could be improved 

- Explore ways to reach and support a more diverse audience within the TSC community, such as those who we might not connect with right now 

**34 |** 



**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: 

- Give a true and fair view of the state of the Charity's affairs as at 31 December 2024 and of its incoming resources and application of resources, including its income and expenditure for the year then ended 

- Have been properly prepared in accordance with United Kingdom Generally Accepted Accounting Practice; and 

- Have been prepared in accordance with Accounting and Reporting by Charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102) and in other respects the requirements of the Charities Act 2011 

## **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. 

**35 |** 



**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: 

- The information given in the Trustees' report for the financial year for which the financial statements are prepared is consistent with the financial statements. 

- The Trustees' report has been prepared in accordance with applicable legal requirements. 

## **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: 

- Adequate accounting records have not been kept, or returns adequate for our audit have not been received from branches not visited by us; or 

- The financial statements are not in agreement with the accounting records and returns; or 

- Certain disclosures of Trustees' remuneration specified by law are not made; or 

- We have not received all the information and explanations we require for our audit; or 

- • The Trustees were not entitled to prepare the financial statements in accordance with the small companies regime and take advantage of the small companies' exemptions in preparing the Trustees' report and from the requirement to prepare a strategic report 

## **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. 

**36 |** 



**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 

**36 |** 



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 Ger*11￿.
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 Unw8r*ty
C8rdlff Unw8r*ty
Inslllule of PsychlBlry Psycho109y
C8rdiff Unw6r*ty
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).