BATTEN DISEASE FAMILY ASSOCIATION CIO
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
Objects
THE OBJECTS OF THE CIO ARE:TO PRESERVE AND PROTECT THE HEALTH AND WELLBEING OF PERSONS AFFECTED BY ALL TYPES OF NEURONAL CERIOD LIPOFUSCINOSIS (NCL) COMMONLY KNOWN AS BATTEN DISEASE.TO ADVANCE THE EDUCATION OF THE MEDICAL PROFESSION AND THE GENERAL PUBLIC ON THE SUBJECT OF BATTEN DISEASE AND ITS IMPLICATIONS FOR THE FAMILY, IN PARTICULAR BUT NOT EXCLUSIVELY BY SUPPORTING AND CONDUCTING RESEARCH INTO THE MANAGEMENT OF BATTEN DISEASE AND TO PUBLISH THE USEFUL RESULTS THEREOF AND TO SUPPORT ORGANISATIONS PROMOTING RESEARCH INTO BATTEN DISEASE.
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.
What the accounts disclose
“There was one employee whose annual emoluments were £60,000 to £70,000.” — page 22
“There was one employee whose annual emoluments were £60,000 to £70,000.” — page 22
“The Trustees still consider that holding free reserves of between 4 and 8 months is appropriate” — page 13
Policies the charity declares
- Bullying and harassment policy and procedures
- Complaints handling
- Complaints policy and procedures
- Conflicting interests
- Engaging external speakers at charity events policy and procedures
- Financial reserves policy and procedures
- Internal charity financial controls policy and procedures
- Internal risk management policy and procedures
- Investing charity funds policy and procedures
- Investment
- Paying staff
- Risk management
- Safeguarding policy and procedures
- Safeguarding vulnerable beneficiaries
- Serious incident reporting policy and procedures
- Social media policy and procedures
- Trustee conflicts of interest policy and procedures
- Trustee expenses policy and procedures
- Volunteer management
From the charity’s annual return (Part A, self-declared)
Self-declared on the annual return for the financial year ending 31/12/2025
- Volunteers: 25
- Employees paid over £60,000: 1 (£70,001–£80,000: 1)
Self-declared on the annual return for the financial year ending 31/08/2024
- Grant-making is its main activity
Register events
- Received assets from another charity (11/12/2025)
Trustees
- Nigel Lorenzo Nichollschair
- Duncan Jamie MacGregor Mann
- Lucy Anne Rodrick
- Mark Alexander Thompson
- Richard Jonathan Oakley
- Robert James Peter Thompson
- Simon David Sewart
Income and spending
| Financial year end | Income | Spending |
|---|---|---|
| 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
Government & lottery funding
| Funder | Date | Amount | Purpose |
|---|---|---|---|
| The National Lottery Community Fund | 20/04/2026 | £20k | Tackling Social Isolation in the Batten Disease Community of Norrthern Ireland |
| The National Lottery Community Fund | 24/07/2025 | £20k | Batten Disease Family Wellbeing Project |
| The National Lottery Community Fund | 08/10/2021 | £9k | Peer Befriending Programme |
Funders of similar charities
| Funder | Similar charities funded | Amount to them |
|---|---|---|
| THE SEGELMAN TRUST | 1 | £160k |
| THE F GLENISTER WOODGER TRUST CIO | 1 | £155k |
| FRIARSGATE TRUST | 1 | £20k |
| THE FORTE CHARITABLE FOUNDATION | 1 | £8k |
| THE BASSIL SHIPPAM AND ALSFORD TRUST | 1 | £7k |
| THE GREEN HALL FOUNDATION | 1 | £3k |
Charities like this
- CHILDREN'S DOMESTIC ABUSE SUPPORT SERVICE (CIO)
- NEW BEGINNINGS FOUNDATION CIO
- CHICHESTER BOYS CLUB CIO
- THE CIAO FOUNDATION CIO
- INTERNATIONAL CHRISTIAN MEDICAL AND DENTAL ASSOCIATION (UK) CIO
- BEAT SCAD
Side by side with its peers
| Charity | Income | Top pay band | Staff >£60k | Reserves vs policy | Fundraising cost | Going concern |
|---|---|---|---|---|---|---|
| BATTEN DISEASE FAMILY ASSOCIATION CIO | £491k | £60,001 - £70,000 | 1 | within | — | no doubt |
| CHILDREN'S DOMESTIC ABUSE SUPPORT SERVICE (CIO) | £29k | — | 0 | within | — | no doubt |
| NEW BEGINNINGS FOUNDATION CIO | £813k | — | — | unclear | — | no doubt |
| CHICHESTER BOYS CLUB CIO | £84k | — | 0 | above | — | no doubt |
| THE CIAO FOUNDATION CIO | £60k | — | 0 | unclear | — | no doubt |
| INTERNATIONAL CHRISTIAN MEDICAL AND DENTAL ASSOCIATION (UK) CIO | £1.9m | — | — | unclear | — | no doubt |