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BATTEN DISEASE FAMILY ASSOCIATION CIO

Registered charity 1205650 · accounts filings on the Charity Commission register · also known as BDFA

A supportive, informative, national networking organisation for the families, carers and professionals giving care to children and adults with Batten Disease and for promoting awareness of, and research into, the disease

Causes: Education/training · The Advancement Of Health Or Saving Of Lives · Disability · website · Get email alerts

Latest income
£491k
Latest spending
£634k
Registered
2023
Accounts read
FY2025

Financial health, per its FY2025 accounts

The accounts state that total unrestricted income was £303,170 against unrestricted expenditure of £484,655, resulting in a net decrease in funds. The trustees report that free reserves of £163,768 remain within their stated policy target of 4 to 8 months of core expenditure, and they confirm there are no material uncertainties regarding the charity's ability to continue as a going concern.

Automated summary of the FY2025 accounts; the evidenced findings below carry the verbatim passages.

What the accounts disclose

Highest-paid employee band: £60,001 - £70,000 — in the top quarter for charities its size (median £60k)
“There was one employee whose annual emoluments were £60,000 to £70,000.” — page 22
Per its FY2025 accounts as filed with the Charity Commission.
Employees paid over £60,000: 1
“There was one employee whose annual emoluments were £60,000 to £70,000.” — page 22
Per its FY2025 accounts as filed with the Charity Commission.
Reserves policy: between 4 and 8 months (held: £164k)
“The Trustees still consider that holding free reserves of between 4 and 8 months is appropriate” — page 13
Per its FY2025 accounts as filed with the Charity Commission.

Accounts independently examined (not a full audit). Discloses 6 of 6 completeness components.

Public fundraising profile: JustGiving — Batten Disease Family Association (matched by registered charity number).

Register events

Trustees · trustee networks

Trustee list from the Charity Commission register (current, not historical).

Operates in: Northern Ireland · Scotland · Throughout England And Wales

Income and spending

Financial year endIncomeSpending
31/12/2025£491k£634k
31/08/2024£0£0

Common questions

Is BATTEN DISEASE FAMILY ASSOCIATION CIO financially healthy?

Per its FY2025 accounts: The accounts state that total unrestricted income was £303,170 against unrestricted expenditure of £484,655, resulting in a net decrease in funds. The trustees report that free reserves of £163,768 remain within their stated policy target of 4 to 8 months of core expenditure, and they confirm there are no material uncertainties regarding the charity's ability to continue as a going concern. Its FY2025 accounts were independently examined.

What does the highest-paid employee of BATTEN DISEASE FAMILY ASSOCIATION CIO earn?

Per its FY2025 accounts, the highest-paid employee was in the £60,001 - £70,000 band, and 1 employees earned over £60,000.

Who funds BATTEN DISEASE FAMILY ASSOCIATION CIO?

Funders whose own accounts filings name BATTEN DISEASE FAMILY ASSOCIATION CIO as a grant recipient include ROBERT LUFF FOUNDATION LIMITED, BEEFY'S CHARITY FOUNDATION, ROCKCLIFFE CHARITABLE TRUST, THE HAREBELL CENTENARY FUND, THE BARBARA WARD CHILDREN'S FOUNDATION.

Known funders

Grants to this charity found in funders’ own accounts filings.

FunderYearAmountPurpose (as stated by the funder)
ROBERT LUFF FOUNDATION LIMITEDFY2025£200k
ROBERT LUFF FOUNDATION LIMITEDFY2023£80k
BEEFY'S CHARITY FOUNDATIONFY2025£60k
ROBERT LUFF FOUNDATION LIMITEDFY2024£30k
ROCKCLIFFE CHARITABLE TRUSTFY2023£25k
BEEFY'S CHARITY FOUNDATIONFY2023£20k
BEEFY'S CHARITY FOUNDATIONFY2024£20k
ROBERT LUFF FOUNDATION LIMITEDFY2022£20k
BEEFY'S CHARITY FOUNDATIONFY2022£15k
THE HAREBELL CENTENARY FUNDFY2022£10k
THE BARBARA WARD CHILDREN'S FOUNDATIONFY2023£5k
THE WILLIE AND MABEL MORRIS CHARITABLE TRUSTFY2023£5k
PILKINGTON CHARITIES FUNDFY2023£5k
THE BARBARA WARD CHILDREN'S FOUNDATIONFY2024£5k
THE BARBARA WARD CHILDREN'S FOUNDATIONFY2025£5k
PILKINGTON CHARITIES FUNDFY2022£5k
THE ANTON JURGENS CHARITABLE TRUSTFY2023£4k
THE LINMARDON TRUSTFY2024£4k
WILFRID AND CONSTANCE CAVE FOUNDATIONFY2025£2k
THE WO STREET CHARITABLE FOUNDATIONFY2024£2k
THE MICHAEL MARSH CHARITABLE TRUSTFY2024£2kGeneral Charitable Purposes
SIR SAMUEL SCOTT OF YEWS TRUSTFY2023£2k
THE CATHERINE COOKSON CHARITABLE TRUSTFY2023£2kMedical, Health and Sickness
THE BARBOUR FOUNDATIONFY2024£2k
THE MICHAEL MARSH CHARITABLE TRUSTFY2023£2kGeneral Charitable Purposes
THE BLYTH WATSON CHARITABLE TRUSTFY2024£2k
THE BLYTH WATSON CHARITABLE TRUSTFY2023£2k
THE WO STREET CHARITABLE FOUNDATIONFY2021£2k
THE DAVID FAMILY FOUNDATIONFY2024£1k
MAY HEARNSHAW CHARITABLE TRUSTFY2024£1kRelief of poverty and sickness
MAY HEARNSHAW CHARITABLE TRUSTFY2025£1kRelief of poverty and sickness
ROCKCLIFFE CHARITABLE TRUSTFY2024£500
THE MICHAEL AND ANNA WIX CHARITABLE TRUSTFY2026£200
THE HAREBELL CENTENARY FUNDFY2023£-10k
THE ANTON JURGENS CHARITABLE TRUSTFY2022—

Government & lottery funding

Grants to this charity published as open data by government and lottery funders (360Giving).

FunderDateAmountPurpose
The National Lottery Community Fund20/04/2026£20kTackling Social Isolation in the Batten Disease Community of Norrthern Ireland
The National Lottery Community Fund24/07/2025£20kBatten Disease Family Wellbeing Project
The National Lottery Community Fund08/10/2021£9kPeer Befriending Programme