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2025-12-31-accounts

Annual Report and Financial Statements

For the period 1st September 2024 - 31st December 2025

CONTENTS

CONTENTS
16 months in the Batten community:Introduction from the Chair and CEO........................... 3
About the Batten Disease Family Association CIO ................................................................ 7
Delivering the Aims and Objectives of the Organisation -BDFA Strategy................................
8
Achievements this Period ......................................................................................................
9
Meet the Board of Trustees and Funders ...............................................................................
11
Legal and Administration Information of Batten Disease Family Association CIO ..................
12
Trustees' Report ................................................................................................................... 13
Statement of Trustee Responsibilities of Batten Disease Family Association CIO.................. 14
Independent Examiner's Report to the Trustees of Batten
Disease Family Association CIO ............................................................................................
15
Statement of Financial Activities ...........................................................................................
16
Balance Sheet .......................................................................................................................
17
Notes to the Accounts ...........................................................................................................
18

BDFA ANNUAL REPORT SEPT 2024 - DEC 2025 | 2

16 months in the Batten Community:

Introduction from the Chair and CEO

We have had another successful, also challenging sixteen months at the Batten Disease Family Association CIO (BDFA), this being the first year as a Charitable Incorporated organisation (CIO). This report covers the period from September 2024 to December 2025, to account for a change in the organisation’s financial year-end. During this period we have supported 109 families across the UK with 122 children and adults, including 11 new diagnoses. Very sadly, due to the life-limiting nature of Batten disease, 5 children, young people and adults have passed away this year.

We have continued to provide effective support and advocacy for families throughout the year and the continued rise in cost of living crisis, also challenging fundraising landscape.

Our dedicated staff team have continued to provide the required level and depth of support to families, and we were pleased to be able to expand capacity in the fundraising and finance teams. At the time of writing, we have 8 members of employed staff (6.4 FTE).

In autumn 2024 we undertook a ‘Values Workshop’ with the National Council for Voluntary organisations (NCVO) to help us to define our organisational core values. Core values are essential in guiding decision-making, defining culture, and building essential trust with donors and beneficiaries.

The workshop involved group work in reflecting and discussing values and how they are understood and utilised as core principles that guide our work. We collectively defined 4 core values and subsequently created a framework of behaviours around them:

We held our annual team and trustees strategic ‘away days’ in late September to discuss progress within our long-term strategy and projects. This was an invaluable time of thought-provoking discussion and essential planning for 2026. Our strategy is detailed on page 8 of this report.

Our brand new website that had been years in the making went live at the end of March 2025. We have created a comprehensive platform to provide supportive, informative and accessible resources for anyone seeking information about Batten disease and the work of the BDFA, as well as bringing together practical advice, parent-led guidance, the latest research, fundraising tools, and much more. We could not be prouder of the result.

BDFA ANNUAL REPORT SEPT 2024 - DEC 2025 | 3

The NICE Re-evaluation of Brineura treatment for patients with CLN2 has continued throughout 2025 and we attended a further two NICE Committee meetings as the representative voice for the community.

BDFA and the community have been steadily building political support throughout the process and we were delighted that our long-standing supporter, Lord Ian Botham and his daughter, Sarah organised a Parliamentary drop-in for us at Westminster in March, inviting MP’s who have families affected by CLN2 in their constituencies to attend the event. Prior to the drop-in event, on Wednesday 12th March children affected by CLN2 and their families, alongside the BDFA gathered at Parliament Square to raise awareness of our campaign. The sea of orange and the collective call for NICE to approve Brineura was very moving to witness, and we were delighted that members of the media attended to speak with parents, Lord Botham and BDFA.

Just a few weeks after the parliamentary event, NICE announced that a commercial agreement had been reached between NHS England and the manufacturer, BioMarin to provide permanent access to Brineura for all existing patients under the Managed Access Agreement.

Our fight has since continued to secure approval of Brineura for children diagnosed in the future and involved attendance at 2 further committee meetings and an appeal hearing towards the end of the year. At the time of writing, we are devastated to report that NICE recently dismissed our appeal and issued final guidance rejecting Brineura for newly-diagnosed children. This reflects the inability of NICE and the manufacturer, BioMarin to reach agreement on a price that reflects the clear and meaningful benefits of treatment. We are calling on NICE and BioMarin to urgently resolve their differences and agree a fair deal that reflects the real value of Brineura for children and families. The BDFA will not stop fighting until every eligible child can access this treatment.

BDFA facilitated a meeting in the autumn for families to hear from Clinicians about potential pathways for access to medicines for CLN3 patients, including the potential for a clinical trial. This is being followed up and we are working with the clinical teams to support them in this.

Our research study examining the diagnostic odyssey of Batten disease, which was led by our Scientific Committee and in collaboration with the Health Policy Partnership, was published this year in the Orphanet Journal for Rare Diseases and we will be launching the policy report formally in 2026. This will be a valuable tool with which to advocate and influence policy makers for improved patient diagnostic and care pathways, leading to earlier diagnosis and better care management for children and adults affected by Batten disease.

We have strengthened our relationships with clinicians, scientists, pharmaceutical companies, and patient advocacy groups this year, keeping abreast of all the latest research developments across all CLN subtypes and we were represented at the international NCL Conference in Australia in October and had opportunity to present data on our work.

BDFA ANNUAL REPORT SEPT 2024 - DEC 2025 | 4

We have taken steps this year to formalise our Research Review Committee, made up of leading clinicians and scientists in the Batten disease space.

Batten Disease Awareness Day on the 9th of June was once again a day to remember with social media, as well as several municipal buildings across the country lit up orange. Families in our community did an incredible job of raising awareness.

In September, we hosted our first Family Day at Temple Newsam estate in Leeds. We were delighted to have the opportunity to bring families together at this wonderful venue, allowing parents, children and siblings to spend quality time together and connect in person. Families enjoyed sensory activities, visits to the Temple Newsam farm and play barn, arts and crafts, and strolls around the vast grounds. We look forward to exploring further opportunities to bring families from our community together in 2026.

Our Family Support and Advocacy service has strengthened with opportunities to provide advocacy support to families, producing good feedback from parents and professionals.

Our peer befriending service continues to thrive, and the Dad’s chat and Mum’s chat groups for all CLN subtypes are developing well, as are the family-led cooking sessions in the school holidays, which are growing in popularity.

Our Family Wellbeing service, which we commission the Maypole Project to deliver continues to support around one third of the families in our community, providing crucial therapeutic and counselling support and we are working with Maypole to expand the provision to include specialist support for older siblings.

BDFA has been proud to be part of the team that has developed the Childhood Dementia Scotland report. Childhood dementia is poorly understood and is caused by more than 145 rare genetic disorders which are progressive and life limiting. Batten disease is one of the most prevalent of these genetic disorders. ‘Childhood Dementia Scotland’ led by Alzheimer’s Scotland with organisations from Scotland and across the UK began the work to address the challenges around childhood dementia. This includes researchers, academics, BDFA and other groups that work with rarer dementias.

Alongside other organisations in the charity sector, the BDFA has experienced a challenging fundraising climate this year with increasing competition for grants and the continued cost of living crisis impacting individual supporter donations. More than ever, we have been grateful to volunteer groups in our community who have organised fundraising events, participated in running and other physical challenge events and made individual donations. Our community fundraising remains an important income stream for the BDFA, and we will continue to seek funding opportunities from trusts and foundations and expand our corporate network in 2026. Our recent Big Give Christmas Challenge was our most successful to date, raising a phenomenal £22,242.50 towards our family wellbeing service. We are extremely grateful to everyone who supported this matched funding initiative.

BDFA ANNUAL REPORT SEPT 2024 - DEC 2025 | 5

Our Chair of Trustees, Zlatko Sisic stepped down from his role on the BDFA Board in May 2025. Zlatko provided excellent leadership to the Board and was instrumental in guiding the charity through some challenging times throughout his time as Chair. We are sincerely grateful to Zlatko for his wisdom and strong leadership during his time with us.

We welcomed our new Chair, Nigel Nicholls to the Board at the end of May 2025. Nigel has a strong background in the pharmaceutical industry and spent over 10 years at BioMarin as Area Director and Country Manager for UK & Ireland. At BioMarin he managed the introductions of NICE managed access agreements for Vimizim® (elosulfase alfa) for Morquio A syndrome and for Brineura® (cerliponase alfa) for ceroid lipofuscinosis 2 (CLN2). We look forward to Nigel’s continued support and Board leadership.

We also welcomed three new Trustees during 2025. Lucy Rodrick and Richard Oakley both have a strong background in healthcare communications and policy particularly around rare diseases and Duncan Mann brings knowledge and experience in HR matters. BDFA has thus strengthened it’s Board with knowledge and expertise that is invaluable to guiding the direction of travel of the BDFA.

With our clearly defined strategic direction and strengthened governance we are looking positively to the future as we continue to work to elevate standards of care, raise awareness of the disease and support research, enabling children and adults who are affected by Batten disease to live life to the full and providing families with the care and support they need so they do not walk this path alone.

Nigel Nicholls, Chair of Trustees Liz Brownnutt, CEO

BDFA ANNUAL REPORT SEPT 2024 - DEC 2025 | 6

About the Batten Disease Family Association CIO

The Batten Disease Family Association was formed in 1998 and became a registered unincorporated charity in 2001. We successfully transitioned to a CIO (Charitable Incorporated Organisation) on 1st September 2024.

ABOUT BATTEN DISEASE

STRUCTURE AND MANAGEMENT

Batten disease, or the Neuronal Ceroid The strategy and oversight of the BDFA are Lipofuscinoses (NCL), is a family of rare diseases directed by the trustees. The day-to-day caused by autosomal recessive genetic mutations.12M management is delegated to the Chief Executive, They are lysosomal storage disorders where Liz Brownnutt. genetic mutations disrupt the cells’ ability to recycle wastes. Cells are thrown out of balance with the build-up of proteins and lipids (fats). The staff team members in the year under review There are 13 known forms of Batten disease and were: you will often hear them referred to as CLN1CLN14. It is estimated that 2-4 births per 100,000 Liz Brownnutt, Chief Executive Officer in the UK are affected by Batten disease, or about 10 a year. Batten disease is neurodegenerative andBefore engaging in client transactions, we conduct Dr Joanna Nightingale, Head of Scientific causes a progressive loss of skills. Children losea Reputational Risk Review Process to identifyAffairs their ability to walk and talk, swallow and see.13% potential environmental and social risks and apply Batten disease also causes childhood dementia internal policies and guidelines.We have alsoSarah Kenrick, Head of Support & Advocacy and intractable epilepsy. There is one treatment available for CLN2 disease. Other treatments arecontinued to expand our range of investment Lisa Forsyth, Operations Manager being developed. products and services that incorporate economic

The strategy and oversight of the BDFA are directed by the trustees. The day-to-day management is delegated to the Chief Executive, Liz Brownnutt.

OUR MISSION

The BDFA’s mission is to enable everyone who is affected by Batten disease to live life to the full 20% and to secure the care and support they need until we find a cure. The BDFA offers informed guidance and support to families and the professionals who work with them as well as actively increasing awareness of the disease and funding future research to identify potential therapies and ultimately a range of cures.

Our objectives are to:

a) Preserve and protect the health and promote the welfare of persons affected by all types of Neuronal Ceroid Lipofuscinosis (NCL) commonly known as Batten disease.

b) To advance the education of the medical profession and the general public on the subject of Batten disease and its implications for the family. c) To promote research into the management of Batten disease and to publish the useful results thereof and to support organisations prompting research into Batten disease.

HOW THE BOARD WORKS

The Board of trustees meet four times a year with the CEO to assess progress in relation to strategy and key projects. We are committed to attracting a diverse range of trustees. These meetings are also occasionally attended by members of the team such as the Head of Scientific Affairs and Head of Support & Advocacy to report on progress regarding key activities. Over the year, two Trustees were parents of children or young people with Batten disease.

BDFA ANNUAL REPORT SEPT 2024 - DEC 2025 | 7

Delivering the Aims and Objectives of the Organisation - BDFA Strategy

The BDFA established its long-term strategy and strategic priorities in 2024. While family support remains at the heart of everything the BDFA does, our focus also includes strengthening our advocacy work to influence policymakers, alongside developing our education, governance, research and fundraising capabilities to deliver lasting and meaningful change for children and young adults affected by Batten disease. This strategy is reviewed annually during the Team and Trustees’ away days.

Elevate Standards of Care

Facilitate the development of transition pathways to adult care.

Raise Awareness

Build and Develop the Organisation

Support Research

Set up the UK Batten disease registry to:

BDFA ANNUAL REPORT SEPT 2024 - DEC 2025 | 8

Achievements this Period

Elevate Standards of Care - this period we have:

Raise Awareness:

Research:

BDFA ANNUAL REPORT SEPT 2024 - DEC 2025 | 9

Achievements this Period

Advocacy:

Governance:

BDFA ANNUAL REPORT SEPT 2024 - DEC 2025 | 10

Meet the board of trustees

Funders

from the period of 1st September 2024 - 31st December 2025

The BDFA wish to thank all the amazing funders who have supported our work during this period:

Anonymous Trust The Nancie Massey Charitable Trust The Barbara Ward Children’s Foundation National Lottery Awards for All England The Barbour Foundation National Lottery Awards for All Scotland Broome Family Charitable Trust The Nicole and Jessica Rich Foundation Cecil and Hilda Lewis Trust Pedal4Memories The Coral Samuel Trust Pilkington Charities Fund The Christopher Laing Foundation Rogers Stirk Harbour + Partners Charitable Foundation The Dalgleish Trust20% The Rubin Trust Foundation Douglas Arter Foundation ShareGift Dora Rebecca Fine Charitable Trust Sheldonia Charitable Trust The Elizabeth Way Foundation The Sir James Roll Charitable Trust Flory’s Story Smile of Hope The George A Moore Foundation The Stockwell/Cliffe Charitable Trust The Grace Trust The Sylvia Aitken Charitable Trust Global’s Make Some Noise The Tendril Trust Himat Tanna Charitable Trust The Thales Charitable Trust The Hospital Saturday Fund The Theodore Maxxy Charitable Settlement The Ian Mactaggart Trust Anonymous Trust The Mabel Cooper Charity The Vandervell Foundation The Marsh Charitable Trust The Vardy Foundation Marshall & Viggars Charitable Trust Walter Guiness Charitable Trust The Michael & Anna Wix Charitable Trust The W O Street Charitable Foundation The Michael Marsh Charitable Trust The Zochonis Charitable Trust

Our special thanks to Beefy’s Charitable Foundation for their generous ongoing support.

BDFA ANNUAL REPORT SEPT 2024 - DEC 2025 | 11

Legal and Administration Information of Batten Disease Family Association CIO

Charity number 1205650 Scientific and Medical Advisers
Professor Sara Mole
Principal Address PO Box 379 Professor in Molecular Cell Biology, UCL
Shipley Great Ormond Street Hospital Children’s Charity Professor
BD18 9GE MRC Laboratory for Molecular Cell Biology
University College London
Independent ExaminerTC Group
The Courtyard		 Gower Street
London WC1E 6BT
Shoreham Road
Upper Beeding Professor Paul Gissen
Steyning Wellcome Trust Senior Research Fellow in Clinical
West Sussex Sciences & Consultant in Paediatric Metabolic Medicine
BN44 3TN Great Ormond Street Hospital
Great Ormond Street
Bankers Metro Bank PLC London WC1N 3JH
One Southampton Row
London Dr Dipak Ram
WC1B 5HA Clinical Lead for Paediatric Neurovascular, CLN2 and
Inherited White Matter Disorders Services
Consultant Paediatric Neurologist, Royal Manchester
Legal Adviser H3 Solicitors Children's Hospital
Suite 1 Oxford Road, Manchester, M13 9WL
The Old Pig Styes
Brighthams Farm
Bines Road
Partridge Green
West Sussex
RH13 8EQ

BDFA ANNUAL REPORT SEPT 2024 - DEC 2025 | 12

Trustees' Report

Financial Review

This is the first trading report of the BDFA CIO. As a result of a Transfer of Assets Agreement all the assets and liabilities of the former BATTEN DISEASE FAMILY ASSOCIATION were transferred shortly after midnight on the 31st August 2024 into this incorporated BATTEN DISEASE FAMILY ASSOCIATION CIO. The Trustees have selected to have 31st December as the Charity’s financial year-end and therefore this first Financial Report covers a sixteen-month period from 1st September 2024 to 31st December 2025. (Any references hereunder to prior period performance relate to the former unincorporated charity the Batten Disease Family Association).

The overall income generated by the BDFA in the financial period was £491,462 which, for 16 months, was comparatively significantly lower than the previous 12 months income of £438,139. The first 4 months of the financial period saw strong income generation. By contrast 2025 has seen significant negative deviations from our budgeted incomes; this has impacted both Trust & Foundations income and our community fundraising incomes and reflects a difficult and uncertain economic and geopolitical landscape, both nationally and internationally.

During the financial period the BDFA has continued to maintain strong cost and budgetary controls so that our unrestricted costs of £484,655 for the 16 months were significantly lower than our budget. The Trustees are disappointed to report that Total Reserves at the end of the financial period are £310,293 which represents a 32% decrease over the prior period end (Aug 2024: £453,100). In these challenging times we are especially grateful to the families and to their wider communities for their tireless support in raising funds for the ongoing work of the BDFA.

Reserves Policy

The Trustees note that our free reserves were £163,768 at the end of the financial period. This is a decrease of £76,318 on the previous period end and reflects particularly on the difficult fundraising environment in which we find ourselves. The Trustees still consider that holding free reserves of between 4 and 8 months is appropriate as the charity develops its activities and strengthens its range of services. At the period end the free reserves equated to 4.9 months of anticipated core expenditure.

Public Benefit

The trustees use the Charity Commission guidance on public benefit and used this to help them plan current and future activities. We have outlined our services and achievements in this report to clearly demonstrate how our work brings public benefit and is beneficial to its beneficiaries.

Key Risks

The impact of the rising cost of living affecting community fundraising and individual giving

BDFA ANNUAL REPORT SEPT 2024 - DEC 2025 | 13

Statement of Trustee Responsibilities of Batten Disease Family Association CIO

Trustees’ responsibilities in relation to the accounts

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

The law requires the trustees to prepare accounts for each financial period which give a true and fair view of the state of affairs of the charity and of the incoming resources and application of resources, including the income and expenditure, of the charity for that period.

In preparing these accounts, the trustees are required to:

The trustees are responsible for keeping adequate accounting records that disclose with reasonable accuracy at any time the financial position of the charity and enable them to ensure that the accounts comply with the Charities Act 2011. 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.

BDFA ANNUAL REPORT SEPT 2024 - DEC 2025 | 14

Independent Examiner's Report to the Trustees of Batten Disease Family Association CIO

I report to the charity trustees on my examination of the accounts of the above charity for the period ended 31 December 2025.

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

Independent examiner's statement

The charity’s gross income exceeded £250,000 and I am qualified to undertake the examination by being a qualified member of the Association of Chartered Certified Accountants.

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.

On behalf of TC Group Office: Steyning, West Sussex Dated: 27th May 2026

BDFA ANNUAL REPORT SEPT 2024 - DEC 2025 | 15

Statement of Financial Activities FOR THE PERIOD ENDED 31ST DECEMBER 2025

Unrestricted Designated Restricted
funds funds funds 2025
Income from: Note £ £ £ £
Donations 3 303,170 19,725 3,400 326,295
Other trading activities 4 159,514 - - 159,514
Investment income 5 5,653 - - 5,653
──────── ──────── ──────── ────────
Total income 468,337 19,725 3,400 491,462
──────── ──────── ──────── ────────
Expenditure on:
Raising funds 6 91,692 - - 91,692
Charitable activities 7 392,963 94,973 54,641 542,577
──────── ──────── ──────── ────────
Total expenditure 484,655 94,973 54,641 634,269
──────── ──────── ──────── ────────
Net income for the period (16,318) (75,248) (51,241) (142,807)
──────── ──────── ──────── ────────
Transfer of funds (60,000) 60,000 - -
──────── ──────── ──────── ────────
Net movement in funds before the
net asset transfer (76,318) (15,248) (51,241) (142,807)
Transfer of assets and liabilities from
Batten Disease Family Association 240,086 136,355 76,659 453,100
(1084908)
──────── ──────── ──────── ────────
Total funds carried forward 16 163,768 121,107 25,418 310,293
════════ ════════ ════════ ════════

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

BDFA ANNUAL REPORT SEPT 2024 - DEC 2025 | 16

Balance Sheet AS AT 31ST DECEMBER 2025

Note £ £
Current assets
Stock 1,646
Debtors 11 6,286
Cash at bank and in hand 353,641
────────
361,573
Creditors: amounts falling due within one period 12 (51,280)
────────
Net current assets 310,293
───────
Net assets 310,293
═══════
The funds of the charity:
Restricted funds 14 25,418
Designated funds 15 121,107
Unrestricted funds 16 163,768
───────
310,293
═══════
The accounts were approved by the Board of Trustees on .........................................
27th May 2026

......... ........................... Nigel Nicholls Chair Charity Registration No. 1205650

BDFA ANNUAL REPORT SEPT 2024 - DEC 2025 | 17

Notes to the Accounts FOR THE PERIOD ENDED 31ST DECEMBER 2025

1 Legal status of charitable company

Batten Disease Family Association CIO is a charitable incorporated organisation. The organisation’s registered number and office address can be found on the Legal and Administrative Information page.

2 Accounting policies

2.1

Basis of preparation

The accounts 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)).

Batten Disease Family Association CIO 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.

The financial statements are prepared in sterling, which is the functional currency of the charity. Monetary amounts in these financial statements are rounded to the nearest pound.

2.2 Going concern

After making appropriate enquiries, the trustees have a reasonable expectation that the charity has adequate resources to continue in operational existence for the foreseeable future. There are no material uncertainties about Batten Disease Family Association CIO’s ability to continue as a going concern.

2.3 Income

All incoming resources are included in the Statement of Financial Activities when the charity is legally entitled to the income, it is probable the income will be received and the amount can be quantified with reasonable accuracy.

Donations and other forms of voluntary income are recognised as income when receivable, except insofar as they are incapable of financial measurement.

Income from charitable activities comprises grants awarded for activities undertaken by the charity's project partners. Grants are credited to the Statement of Financial Activities in the period in which they are receivable unless a grant is subject to donor imposed conditions that specify the time period in which the expenditure of the resources can take place; in which case they are deferred.

2.4 Expenditure and basis of apportioning costs

Expenditure is accounted for on anaccruals basis with the irrecoverable element of VAT included with the item to which it relates and has been classified under headings that aggregate all costs related to the category.

Charitable activities comprises all expenditure directly relating to the objectives of the charity.

Governance costs (included within Support costs) comprises all costs associated with constitutional and statutory requirements with which the charity must comply.

BDFA ANNUAL REPORT SEPT 2024 - DEC 2025 | 18

Notes to the Accounts FOR THE PERIOD ENDED 31ST DECEMBER 2025

2 Accounting Policies (continued)

2.5 Stock

Stocks are stated at the lower of cost and estimated selling price less costs to complete and sell. Cost comprises direct materials and, where applicable, direct labour costs and those overheads that have been incurred in bringing the stocks to their present location and condition.

Stocks held for distribution at no or nominal consideration are measured at the lower of cost and replacement cost, adjusted where applicable for any loss of service potential.

At each reporting date, an assessment is made for impairment. Any excess of the carrying amount of stocks over its estimated selling price less costs to complete and sell is recognised as an impairment loss in profit or loss. Reversals of impairment losses are also recognised in profit or loss.

2.6 Debtors

Trade and other debtors are recognised at the settlement amount due after any trade discount offered. Prepayments are valued at the amount prepaid net of any trade discounts due.

2.7 Cash at bank and in hand

Cash at bank and in hand includes cash and short term highly liquid investments. The trustees seek to use short term deposits to maximise the return on monies held at the bank and to manage cash flow.

2.8 Creditors and provisions

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

2.9 Fund Accounting

Unrestricted funds are to be used in accordance with the charitable objectives at the discretion of the Trustees.

Restricted funds are to be used for particular restricted purposes within the objectives of the charity. Restrictions arise when specified by the donor or when funds are raised for particular restricted purposes.

Designated funds are funds set aside by the trustees out of unrestricted income funds for specific future purposes or projects.

2.10 Judgements and key sources of estimation uncertainty

In the application of the charity’s accounting policies, the trustees are required to make judgements, estimates and assumptions about the carrying amount of assets and liabilities that are not readily apparent from other sources. The estimates and associated assumptions are based on historical experience and other factors that are considered to be relevant. Actual results may differ from these estimates.

The estimates and underlying assumptions are reviewed on an ongoing basis. Revisions to accounting estimates are recognised in the period in which the estimate is revised.

The trustees do not consider that there are any critical estimates or areas of judgement that need to be brought to the attention of the readers of the financial statements.

BDFA ANNUAL REPORT SEPT 2024 - DEC 2025 | 19

Notes to the Accounts (continued) FOR THE PERIOD ENDED 31ST DECEMBER 2025

3 Income from donations

3 Income from do nations
Unrestricted Designated Restricted Total
funds
£		 funds
£		 funds
£		 2025
£
Regular monthly donations 7,869 - - 7,869
Donations gift aid 5,303 - - 5,303
Donations non gift aid 10,492 - - 10,492
Donated services 52 - - 52
Donations- organisations & schools 28,081 19,725 - 47,806
Foundations & trusts 233,613
────────		 - 3,400 237,013
Pharmaceutical Grants 388 - - 388
Gift aid reclaimed 5,427 - - 5,427
In Memoriam 11,945 - - 11,945
──────── ──────── ──────── ────────
Total income from donations 303,170 19,725 3,400 326,295
════════ ════════ ════════ ════════
4 Income from other charitable activities
Unrestricted Designated Restricted Total
funds funds funds 2025
£ £ £ £
Supporter fundraising 156,945 - - 156,945
Fundraising activities 375 - - 375
Merchandise sales 2,194 - - 2,194
──────── ──────── ──────── ───────
Total income from other charitable activities 159,514 - - 159,514
════════ ═══════ ═══════ ═══════
5 Investment income
Unrestricted Designated Restricted Total
funds funds funds 2025
£ £ £ £
Interest income 5,653 - - 5,653
──────── ────── ────── ──────
Total investment income 5,653 - - 5,653
═════ ═════ ═════ ═════

BDFA ANNUAL REPORT SEPT 2024 - DEC 2025 | 20

Notes to the Accounts (continued) FOR THE PERIOD ENDED 31ST DECEMBER 2025

6 Raising funds
Staff Other Total
costs costs 2025
£ £ £
Cost of raising funds 72,542 19,150 91,692
──────── ─────── ──────
Total cost of raising funds 72,542 19,150 91,692
──────── ─────── ──────
7 Charitable activities
Staff Other Total
costs costs 2025
£ £ £
Expenditure on charitable activities
Activities undertaken directly 186,216 140,388 326,604
Support costs 51,866 164,107 215,973
──────── ─────── ──────
Total charitable activities 238,082 304,495 542,577
──────── ─────── ──────
Analysis of support – other costs (including Governance costs) Total
2025
£
General office and administration 161,587
Governance costs:
Independent examiners fees 2,520
──────
164,107
═════

8 Trustee transactions

During the period, 5 trustees were reimbursed expenditure totalling £259.

No trustees received any remuneration for their work during the period.

BDFA ANNUAL REPORT SEPT 2024 - DEC 2025 | 21

Notes to the Accounts (continued) FOR THE PERIOD ENDED 31ST DECEMBER 2025

9 Staff costs

Staff costs
2025
£
Wages and salaries 284,252
Social security costs 16,994
Other pension costs 9,378
───────
310,624
═══════
The average monthly number of employees during the period was as follows:
2025
Fundraising 2
Charitable activities 5
───────
7
═══════

There was one employee whose annual emoluments were £60,000 to £70,000.

The key management personnel of the charity comprise of the Chief Executive Officer.

10 Taxation

As a charity, Batten Disease Family Association CIO is exempt from tax on income and gains to the extent that these are applied to its charitable objects.

11 Debtors
11 Debtors 2025
£
Trade Debtors 253
Prepayments 6,033
───────
6,286
═══════
12 Creditors: amounts falling due within one period 2025
£
Trade Creditors 38,463
Accruals and deferred income 7,020
Other creditors 431
PAYE Payable 5,366
───────
51,280
═══════

BDFA ANNUAL REPORT SEPT 2024 - DEC 2025 | 22

Notes to the Accounts (continued) FOR THE PERIOD ENDED 31ST DECEMBER 2025

14 Restricted funds

The income funds of the charity include restricted funds comprising the following unexpended balances of donations and grants held for specific purposes:

Movement in funds Movement in funds
Transfer of funds
from Batten
Disease Family Incoming Resources Balance at
Association Resources Expended Transfers 31.12.2025
Euro Ed project BioMarin
1,366		 - (1,366) - -
Fundraising BioMarin 11,952 - (11,952) - -
Brineura
Travel costs		 5,252 - (4,792) - 460
Impact Research 33,097 3,400 (11,539) - 24,958
Programme
Swaffield / Flory's Story 24,992 - (24,992) - -
─────── ─────── ─────── ─────── ───────
76,659 3,400 (54,641) - 25,418
═══════ ══════ ═══════ ═══════ ═══════

Euro Ed Project is a Europe-wide education project focused on CLN3.

Fundraising and Management (BioMarin) is specifically to rebuild capacity within the BDFA to diversify income, shape fundraising and enhance resources.

Brineura Travel Costs (BioMarin) – BioMarin have provided additional Funds to cover travel costs to GOSH to counter delays in opening other treatment centres.

Impact Research Programme – A programme commissioned to identify and provide guidance on Early Diagnosis. Swaffield / Flory's Story – A donation towards the costs of the Head of Scientific Affairs.

15 Designated funds

The funds of the charity include designated funds,representing amounts set aside by the trustees for specific purposes at their discretion:


purposes at their discretion:
Movement in funds
Transfer of funds
from Batten
Disease Incoming Resources Balance at
Family Association Resources Expended Transfers 31.12.2025
Brineura in the Eyes 52,963 - (14,735) - 38,228
Berties Helpers 48,925 18,625 (22,450) - 45,100
Orange Folder 662 - - (662) -
Website reconstruction 33,805 - (8,888) (12,500) 12,417
Public Relations - - (3,232) 3,232 -
Family Events - 1,100 (3,313) 12,000 9,787
Strategy Away Days - - (4,289) 10,000 5,711
Designated NICE
Campaign costs		 - - (36,000) 37,930 1,930
Bereavement Support Counselling - - (2,066) 10,000 7,934
─────── ────── ────── ────── ───────
136,355 19,725 (94,973) 60,000 121,107
═══════ ══════ ══════ ══════ ═══════

BDFA ANNUAL REPORT SEPT 2024 - DEC 2025 | 23

Notes to the Accounts (continued) FOR THE PERIOD ENDED 31ST DECEMBER 2025

15 Designated funds (continued)

Brineura in the Eyes - Funds received under restricted covenants to meet the costs of the GOSH Compassionate Use Programme.

Berties Helpers - a fund set up to meet the costs of the Berties Helpers programme to support families encountering difficulties by providing a special meal, also providing a special anniversary meal for bereaved families.

Orange Folder- holds funds transferred from unrestricted funds to redevelop our leaflets which are an essential resource for families.

Website reconstruction - funds designated for the development and maintenance of a new website which went live during the period under review.

Public Relations - This fund was transferred from unrestricted reserves to cover costs associated with our campaign to ensure continuing access to Brineura. Unspent sums were reallocated to the more general “Designated NICE Campaign Costs”

General Reserve - During the period €60,000 was allocated by the Trustees out of unrestricted reserves – these sums have subsequently been allocated to specific designated cost areas.

Family Events - Part of the General reserve was set aside to fund events that enabled families to come together. One such event was help during this financial period.

Strategy Away Day - Part of the General reserve was set aside to fund the annual meeting at which all staff and Trustees come together to review the status of the charity and to agree strategic direction.

Designated NICE Campaign costs - Part of the General reserve and reallocated PR reserve this fund supports our campaign to persuade NICE to enable continuing treatment of Brineura for affected children. Includes legal, PR and lobbying costs.

Bereavement Support Counselling - Part of the General reserve that has been set aside to finance two years of a new counselling programme for families suffering loss.

16 Analysis of net assets between funds

Unrestricted Designated Restricted Total
funds funds funds
Fund balances at 31 December 2025 are £ £ £ £
represented by:
Current assets 215,048 121,107 25,418 361,573
Creditors: amounts falling due within one
period		 (51,280) - - (51,280)
─────── ─────── ─────── ───────
163,768 121,107 25,418 310,293
══════ ══════ ══════ ══════

17 Ultimate controlling party

The charity was under the control of the Trustees during the period under review.

18 Transfer of net assets and operations

On the 1st September 2024, the net assets and operations of the former Batten Disease Family Association (unincorporated charity) were transferred to the Batten Disease Family Association CIO. The net assets transferred totalled £453,100.

BDFA ANNUAL REPORT SEPT 2024 - DEC 2025 | 24

Batten Disease Family Association CIO PO Box 379, Shipley, BD18 9GE

07354 486 586 www.bdfa-uk.org.uk

@bdfabattendisease

@bdfauk

@battendiseaseuk

@batten-disease-family-association