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2025-03-31-accounts

CIO

Trustees Report and Financial Statements

for the year ended

31 March 2025

Registered Charity 1185380

Arthur’s Quest

SLC6A1 Connect UK

Contents Page

Contents Page
Contents Page
Report of the Trustees 3 - 13
Statement of fnancial actvites 14
Balance Sheet 15
Notes 16 - 18
Independent Examiner’s report 19

For the year ended 31 March 2025

CHARITY NUMBER 1185380

Arthur’s Quest

SLC6A1 Connect UK

The Trustees present their annual report and financial statements of SLC6A1 Connect UK-AQ Charity for the year ended 31 March 2025

REFERENCE AND ADMINISTRATIVE INFORMATION

Charity name: Arthur’s Quest / SLC6A1 Connect UK Charity Registration Number: 1185380 Trustees: Lindsay Randall Jonathan Roberts Alex Duncum Bankers: NatWest Bank Plc Administrative address The Office 4 Hopgarden Rd Tonbridge Kent TN10 4QS

Independent Examiner: Simon Robinson, MAAT SAS Accounting Services Ltd The Colchester Centre Hawkins Road Colchester CO2 8JX

The Trustees present their Trustees’ report and financial statements in accordance with the Charities Act 2011 and the Charity SORP 2005.

1. Structure, governance, and management

The governing document

The Charity Arthur’s Quest was constituted as a Charitable Incorporated Organisation (CIO) on 18[th] September 2019.

In 2024 SLC6A1 Connect UK was added as a working name for the benefit of increasing professional and public awareness. This name is on brand for the global network.

Organisational structure and management

SLC6A1 Connect UK-AQ is governed by its Trustee Board which is responsible for setting the strategic direction of the organisation and the policy of the charity. Trustees meet as a minimum once per year, ideally in person where possible, to review operational, financial and strategic progress.

CHARITY NUMBER 1185380

Arthur’s Quest

SLC6A1 Connect UK

Additional meetings can be proposed by any Trustee at any point in the year as required for the benefit of the Charity.

Trustees

The Trustees holding office during the period and up to the date of this report (unless otherwise stated) are:

Lindsay Randall Jonathan Roberts Alex Duncum

Recruitment and appointment of Trustees

The trustees are appointed by the governing document. Future trustees may be appointed by a resolution of the trustees passed at a meeting of the of the trustees.

Trustee induction and training

Trustees are selected for their expertise that is relevant to the charity, so that a wide knowledge base can be brought to bear on fundraising, finance, marketing, and administration. Each year the Trustees review their collective ability to fulfil the charity’s objectives.

Statement of trustees’ responsibilities

Law applicable to charities in England and Wales requires the trustees to prepare financial statements for each financial year which give a true and fair view of the Charity’s financial activities during the year and of its financial position at the end of the year. In preparing the financial statements giving a true and fair view, the trustees should follow best practice and:

The trustees are responsible for keeping accounting records which disclose with reasonable accuracy the financial position of the charity, and which enable them to ensure that the financial statements comply with the Charities Act. 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. They are required to apply the funds of the charity with complete fairness to meet the objects of the charity.

Investment powers and policy

The governing document grants unrestricted powers of investment to the trustees.

Risk management

CHARITY NUMBER 1185380

Arthur’s Quest

SLC6A1 Connect UK

The Trustees consider the charity is exposed to little risk, but this position is periodically reviewed and documented. Where a risk is identified it is mitigated and managed as could be considered reasonable.

2. Objectives and activities

The objects of the CIO are to relieve the sickness of individuals with a pathogenic genetic variant in the SLC6A1 gene, in particular, but not exclusively by:

(1) SUPPORTING RESEARCH INTO THE CONDITION;

(2) PROVIDING INFORMATION, ADVICE AND SUPPORT TO SUCH INDIVIDUALS, THEIR FAMILIES AND CARERS; AND

3. Public benefit statement

SLC6A1 Connect UK-AQ operates for public benefit. The trustees confirm that they complied with the duty in Section 17 of the Charities Act 2011 to have due regard to the general guidance on public benefit, ‘Charites and Public Benefit’.

4. Achievement and performance during the period 1[st] April 2024 to 31st March 2025

In May 2024, SLC6A1 Connect UK-AQ was selected as part of the Beacon for Rare Diseases mentorship programme. We received mentorship for 12 months from Mark Boulding, who has a wealth of voluntary sector and healthcare communications experience.

The Charity identified 6 SMART goals to work through over the year.

1.

Grow identified patient population in the UK by 50% within AQ network in the next 12 months. Help identified families to understand the pathophysiology of SLC6A1 and the science being researched and developed with and for this disease and its community, by completing a 6 monthly newsletter, managing the UK Family WhatsApp group to improve engagement 3-6 monthly virtual family meetings over the next 12 months.

This goal was mostly achieved. We issued an annual newsletter due to restraints on volunteer time. The identified population in the UK (identified to the organisation) grew by 23%. This was achieved by raising the Charity profile, reaching out to clinicians at events and via platforms such as Decipher, and receiving referrals from global partners. A 2 monthly family meeting was held virtually.

2.

CHARITY NUMBER 1185380

Arthur’s Quest

SLC6A1 Connect UK

Monitor six current UK SLC6A1 projects at least monthly, providing knowledge and data as required and available, connecting researchers with resources and forming collaborations as required to further advance each project:

2.1. Bristol – Genroc – review outcomes of this study in 6 months time. Publish/Share Gnotes podcast interview with AQ/Genroc once launched Aug/Sept 24. Continue to share on social media and among UK 0-16 community for participation. (rare disease and grow study+QoL)(not funded by AQ) – Achieved. You can listen to the GenROC-related podcast episode featuring Jillian Hastings Ward, Dr Karen Low, and Lindsay Randall on Behind the Genes via Listen Notes

2.2. Cardiff – Vincenzo Crunelli and Tatiana Morais - Targeting astrocytic GAT1 dysfunction rescue of absence seizures and their comorbidities. Follow up every 3-6 months for progress and outcomes of this project. (not funded by AQ) – Achieved.

2.3. Newcastle – Mouhamed Alsaqati – SLC6A1 neuronal biomarkers – PhD project. Follow up with this project again July 2024 to offer resources – link with SLC6A1 Connect. Follow up fortnightly or as required to ensure continued engagement and thoughput. Support project to get off the ground. PhD project to start January 2025. (PhD not funded by AQ – Partially achieved. The University did not offer the PhD funding we had been counting on, despite supply of frozen biological resources being supplied by the organisation. Mouhamed continued to work with the organisation to establish a research project.

2.4. A London Lab – CONFIDENTIAL Touch base 2 monthly until project finalised and funding approved. Then 3-6 monthly updates to monitor progress. (requires funding from AQ – awaiting grant application) Not Achieved – after several meetings over the year, this exciting research project did not take off due to professional time restraint.

2.5. UCL – CONFIDENTIAL (Touch base 2 monthly until project finalised and funding approved. Then 3-6 monthly updates to monitor progress. (requires funding from AQ) – Achieved.

2.6. Costello Medical – Accepted application for ProBono project – collate European data for off trial use of Ravicti into a quantitative data set to present to regulators and disease world, in support of our continued application to access Ravicti for SLC6A1 patients, as well as other DEE’s such as STXBP1, SYNGAP1, GABA A, FOXG1 etc. Connect with Costello according to action list and ongoing collaborations. This is a shared project with TSA and CGD. As this project was offered on a shared basis, it did not meet the initial requested parameters, moreover it produced an advisory document and pathway to achieving what we need to achieve. The final report entitled ‘Empowering Rare Disease Charities with Real-World Evidence (RWE)’ can be found in the link below:

  1. Set up policies required as a CIO in the next 6 months.

CHARITY NUMBER 1185380

Arthur’s Quest

SLC6A1 Connect UK

This was achieved with Mark’s support and help from other small non profits, and Chat GPT. The policies and governance is still an area of focus for the organisation and we will have a recruitment campaign in 2025 to recruit someone with the right knowledge and skills to keep the organisation on track and transparent.

  1. Set up a secure and compliant database/online rolodex – patient and professional data (GDPR)(currently

stored on laptop hard drive).

Microsoft 365 business (non profit) account formed and OneDrive used as a secure cloud storage space. This will enable us to produce high quality content more quickly, and to more easily collaborate in a confidential and efficient space.

  1. Continue recruitment discussions with tertiary teams to become Centre of excellence for SLC6A1 in the UK. At least monthly check in, building a trusting relationship that will result in a specialist team of SLC6A1 experts in the UK, who will also form part of AQ clinical advisory team. Aim to get agreed in the next 6-12 months.

We have developed lasting relationships with a professional MDT at several tertiary hospitals in the UK. None of them has signed up to act as a Centre of Excellence for SLC6A1, however Doctors’ Despoina Mandelenaki and Amy McTague have agreed to be clinical advisors for the organisation, and have a number of patients with SLC6A1 under their care. We also have Prof Stephan Sanders and Prof Vincenzo Crunelli as our Scientific Advisors.

  1. Recruit voluntary support to help run the charity over the next 12 months with the help of my mentor. Complete BEACON online training resources on this topic. Volunteers needed:

  2. 6.1. Treasurer

  3. 6.2. Social media

  4. 6.3. Fundraising and grant writing/applications-

  5. 6.4. Events-fundraising and community building

Training completed. This is a piece of work that has been carried over to 2025 due to other commitments becoming a priority. We were supported with voluntary accounting guidance throughout this year by Ben McGrath, which was gratefully received.

CHARITY NUMBER 1185380

Arthur’s Quest

SLC6A1 Connect UK

Tonbridge Lions Dragon Boat Race, September 2024, Charity Dinner Dance, June 2024

Additionally we held a number of fundraising events through the year including our first Charity Dinner, and a Dragon Boat Race.

In September 2024, following a successful abstract submission, and with supportive sponsorship from UCB, we held a special interest mini for a at the European Epilepsy Congress in Rome. This was a successful and well attended session, with lots of interaction from the audience. Presentations were given by CEO Lindsay Randall, Katrine Johannesen, PhD, Angel Aledo-Serrano, PhD, Andrea De Colle, CEO SLC6A1 Connect Italia, Susana Boronat, PhD. We also collaborated on a poster which was presented by Filadelfia.

March 2024 – March 2025 was such an exciting and full year for the Charity. We also:

CHARITY NUMBER 1185380

Arthur’s Quest

SLC6A1 Connect UK

----- Start of picture text -----
We invited the professional audience at EEC, 2024, to
represent the SLC6A1 and GABAAR community by reading out
aloud their statements on the effect of RAVICTI on their
children, the condition, and their quality of life. It was a
powerful moment.
Why is
Phenylbutyrate
so important
for our families
to try?
----- End of picture text -----

CHARITY NUMBER 1185380

Arthur’s Quest SLC6A1 Connect UK

December 2024 was an important month for the Charity as it was the month we co-founded SLC6A1 Europe and recruited all 7 registered patient organisations from across Europe, and 3 Centres of Excellence, Sant Pau, Filadelfia and Insubria, and with commitment, motivation and support from these members and sponsors Lundbeck, Longboard, UCB, Praxis, BIOCODEX, Elexy, ZUG power and g-defy, SLC6A1 Europe planned its inaugural European symposium on August 28[th] and 29[th] 2025, Lisbon.

With thanks to our many supporters this year Costello Medical, Beacon, Mark Boulding, Ben McGrath, UCB, Biocodex, Lundbeck:Longboard, Praxis, g-defy, ZUG power, Elexy, James Lark (Mayor of Tonbridge 23/24), Karda lab, Mouhamed Alsaqati, Vincenzo Crunelli, Karen Low, Katrine Johannesen, and the many other researchers, scientists, clinicians, families, PAGs that have helped us, worked with us, and guided us.

5. Financial Review

Income for the year was £26,906 which includes £13,623 in respect of donations. Expenditure for the year was £16,863 resulting in a net movement of funds of £10,043 and with reserves of £7,056 brought forward from 2024 reserves at the end of the year were £17,099.

Reserves shall be used for the following purposes:

to provide fixed and working capital; to provide for future contingencies; and to provide a base for future development in order to deliver the charity’s strategic objectives.

The charity has financial reserves that can be a combination of restricted and unrestricted reserves. Restricted reserves are funds that have been given for a specific charitable purpose.

CHARITY NUMBER 1185380

Arthur’s Quest

SLC6A1 Connect UK

The Trustees consider that the available reserves (i.e. liquid and readily realisable assets, excluding restricted funds represented in these assets) should be maintained in a range between three and six months of operational expenditure.

The Trustees also recognise that owing to the need for resources to be used to finance planned expansion, there may be periods when reserves cannot be maintained within these limits, however sufficient reserves shall be maintained to cover known commitments.

6. Future Plans for 2024-26

This reported period has been a busy and eventful time for the organisation. We have succeeded in building a network within the UK and around Europe in support of SLC6A1 and in search of translational science that will change lives for the better. Our strategy for the coming years will address the following key issues:

Our recent growth in reach and capacity necessitates increased sustainable funding

We have set four new strategic goals to address these issues, which we will work towards in 2024-26:

Goal 1: Improve real world evidence around the use of repurposed drug Glycerol Phenylbutyrate

We will push forward with the collection of real world evidence from the SLC6A1 community, as well as other DEE populations that have been involved in the open label US trial, and have growing successful off label use of the drug.

CHARITY NUMBER 1185380

SLC6A1 Connect UK

Arthur’s Quest

2024/26 priority activities for Goal 1

  1. Continue to maintain and develop data and participate in collaborative projects

  2. Recruit a steering committee to map the routes to regulatory approval and reimbursement for UK and European patients

  3. Publish data once deemed an acceptable number of participants by the steering committee

  4. Collaborate on a multicentre trial as a RWE drug repurposing pilot with project partners

Goal 2: Empower patients & carers

We will empower patients and carers living with SLC6A1 to get the right support from their healthcare providers.

2024/26 priority activities for Goal 2

  1. Provide educational information for patients/carers on their disease, through chat rooms, newsletters, and our website

  2. Develop a practical tool to help patients communicate the overall picture of their symptoms to their HCPs

  3. Run a patient/carer community event (in person or online) to connect people, deepen their understanding of how to navigate the challenges of their healthcare system, and launch our new resources

  4. Support the development of accessible illustrated videos for carers and family of SLC6A1 patients to help them better understand their condition, and the science around it, and advances in treatments

Goal 3: Increase sustainable funding

We will increase and diversify our income and make it more sustainable.

2024/26 priority activities for Goal 3

  1. Allocate specific staff resource to increase our level of targeted fundraising activity

  2. Diversify our fundraising efforts to include Trusts & Foundations, and Community fundraising

  3. Deepen and broaden our engagement with actual/potential pharmaceutical company funders

  4. Seek multi-year funding commitments to enable longer term projects such as building a biorepository in Europe.

Goal 4: Formalise legal registration of SLC6A1 Europe and build surrounding infrastructure

CHARITY NUMBER 1185380

Arthur’s Quest

SLC6A1 Connect UK

We will continue to collaborate with European partners to build this important alliance and move science towards treatments.

2024/26 priority activities for Goal 4

  1. Seek professional and financial support to ensure the development of SLC6A1 Europe, Research and Support Alliance (SERSA)

  2. Collaborate with funders to maintain SERSA and ensure a sustainable future

  3. Obtain and expand membership, maintaining a database and registry of members and relevant projects

  4. Support scientific projects, grant applications and facilitate partnerships across the network

  5. Build a website and resources, including ongoing membership meetings

  6. Ensure representatives attend the monthly virtual lab meeting of SLC6A1 Connect

Approved by the Trustees on

and signed on their behalf by

CEO and Chair of Trustees

Lindsay Randall

Trustee

Alex Duncum

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13/01/2026
13/01/2026
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CHARITY NUMBER 1185380

Arthur’s Quest SLC6A1 Connect UK

Arthur's Quest

SLC6A1 Connect UK-AQ

Statement of Financial Activities (including Income and Expenditure account) for the year ended 31 March 2025

2025 2024
Note Unrestricted Unrestricted
£ £
Incoming resources
Income resources from generated funds:
Voluntary income
Donatons 13,623 6,601
Other income 9,149 18
Fundraising Actvites 4,134 360
Total incoming resources 26,906 6,979
Resources expended
Cost of generatng funds 4 3,291 5,978
Charitable actvites 5 13,572 3,812
Total resources expended 16,863 9,790
Net movement in funds 10,043 (2,811)
Reconciliaton of funds
Funds brought forward at 1 April 2024 7,056 9,867
Funds carried forward at 31 March 2025 17,099 7,056

The statement of financial activities includes all gains and losses recognised in the year. All income and expenditure derive from continuing activities.

The notes on pages 16 to 18 form an integral part of these financial statements.

CHARITY NUMBER 1185380

Arthur’s Quest SLC6A1 Connect UK

SLC6A1 Connect UK-AQ

Arthur's Quest

SLC6A1 Connect UK-AQ

Balance Sheet as at 31 March 2025

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|||| |---|---|---| |2025|2024| |£|£| |Current assets| |Bank|17,099|7,056| |Net Assets|17,099|7,056| |Income funds| |Unrestricted|17,099|7,056| |Balances carried forward|17,099|7,056|

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The financial statements were approved by the Board and signed on its behalf by

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||| |---|---| |Lindsay Randall|Alex Duncum| |CEO and Chair of Trustees|Trustee| |Date:|Date:| |13/01/2026| |13/01/2026| |Charity number: 1185380|

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CHARITY NUMBER 1185380

Arthur’s Quest

SLC6A1 Connect UK

Notes to the financial statements for the year ended 31 March 2025

1. Accounting policies

1.1. Basis of Preparation

The financial statements have been prepared in accordance with 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) (effective 1 January 2019) – (Charities SORP (FRS 102)), the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102) and the Companies Act 2006.The charity meets the definition of a public benefit entity under FRS 102. Assets and liabilities are initially recognised at historical cost or transaction value unless otherwise stated in the relevant accounting policy note(s).

1.2. Preparation of the accounts on a going concern basis

The Trustees regularly review forecasts of income and liabilities, as well as operational plans, and consider that the charity has adequate resources to continue as a going concern for the next 12 months from the date of this report. The principal accounting policies adopted in the preparation of the financial statements are set out below.

1.3. Income

Income is recognised in full in the Statement of Financial Activities in the year in which it is receivable and when the effect of a transaction results in an increase in the charity’s assets.

Grants receivables are recognised when entitlement to the grant is confirmed and in line with the specific requirements of the funding agreement.

1.4. Interest receivable

Interest on funds held on deposit is included when receivable and the amount can be measured reliably by the charity: this is normally upon notification of the interest paid or payable by the Bank.

1.5. Expenditure

CHARITY NUMBER 1185380

Arthur’s Quest

SLC6A1 Connect UK

Expenditure is recognised once there is a legal or constructive obligation to make a payment to a third party, it is probable that settlement will be required, and the amount of the obligation can be measured reliably. Charitable activities’ direct costs and support costs are those costs incurred directly in support of expenditure on the objects of the charity and include project management. Internal costs are allocated to restricted activities on the basis of time spent by staff on pursuing such projects, and external costs are allocated where they are incurred directly for that purpose. Governance costs are those incurred in connection with administration of the charity and compliance with constitutional and statutory requirements.

2. Funds structure

Unrestricted funds are available to spend on activities that further any of the purposes of charity. Designated funds are unrestricted funds of the charity which the trustees have decided at their discretion to set aside to use for a specific purpose.

3. Creditors and provisions

Creditors and provisions are recognised where the charity has a present obligation resulting from a past event that will probably result in the transfer of funds to a third party and the amount due to settle the obligation can be measured or estimated reliably. Creditors and provisions are normally recognised at their settlement amount.

5. Cost of Raising Funds

Cost of Raising Funds
Fundraising costs 2025
2024
£
£
3,291
5,978
3,291
5,978

6. Resources Expended

CHARITY NUMBER 1185380

Arthur’s Quest

SLC6A1 Connect UK

Resources Expended

Conferences
Administraton costs
Subscriptons
Grants
Conferences
Administraton costs
Subscriptons		 Charitable
Support
2025
2024
Actvites
Costs
Total
Total
£
£
£
£
11,625
-
11,625
3,365
-
805
805
205
-
289
289
242
853
-
853
-
12,478
1,094
13,572
3,812
Charitable
Support
2024
Actvites
Costs
Total
£
£
£
3,365
-
3,365
205
205
242
242
3,365
447
3,812

7. Trustees' emoluments

Trustees do not receive remuneration but are reimbursed for expenses. During this year end Trustees received £5,863.02 reimbursed expenses.

8. Related party transactions

There were no related party transactions in the year (2024: Nil)

9. Taxation

The charity is exempt from tax on income and gains falling within section 505 of the Taxes Act 1988 or section 252 of the Taxation of Chargeable Gains Act 1992 to the extent that these are applied to its charitable objectives.

CHARITY NUMBER 1185380

SLC6A1 Connect UK

Arthur’s Quest

Independent examiners' report to the members of Arthur’s Quest, SLC6A1 Connect UK on the accounts for the year ending 31 March 2025.

I report to the trustees on my examination of the accounts of the above charity (“the Trust”) for the year ending 31 March 2025 set out on pages 14-18.

Responsibilities and basis of report

As the charity’s trustees, you are responsible for the preparation of the accounts in accordance with the requirements of the Charities Act 2011 (‘the act’).

I report in respect of my examination of the Trust’s accounts carried out under section 145 of the 2011 Act and in carrying out my examination, I have followed all applicable Directions by the Charity Commission under section 145(5)(b) of the Act.

Independent examiner’s statement

I have completed my examination. I confirm that no material matters have come to my attention in connection with the examination which gives me cause to believe that in, any material respect:

I have no concerns and have come across no other matters in connection with the examination to which attention should be drawn in this report in order to enable a proper understanding of the accounts to be reached.

Signed: Date:

Relevant professional qualification(s) or body Address:

Simon Robinson MAAT SAS Accounting Services Ltd The Colchester Centre Hawkins Road Colchester CO2 8JX

CHARITY NUMBER 1185380