01 Identity
Registration and reporting
- Registration status
- Registered
- Reporting status
- New
- Charity type
- CIO
- Registered
- 21 September 2026
- Removed
- Not supplied
- Financial period
- Not supplied – Not supplied
- Latest income
- Not supplied
- Latest expenditure
- Not supplied
- Gift Aid
- No
- Owns or uses land
- No
- In administration
- No
- Insolvent
- No
- CIO
- Yes
Public contact address: 43B HILL ROAD, KERESLEY END, COVENTRY, CV7 8JQ
Website recorded by the regulator: https://fightingbattendisease.org (displayed as text)
02 Activities
What the charity does
We support children, young people and adults affected by Batten disease (neuronal ceroid lipofuscinoses, CLN1-CLN14). Recently registered, we currently provide information, advice and signposting, and are establishing support covering equipment, therapies and services. We will fund research into causes, treatment, prevention and cure, and educate the public, professionals and carers.
03 Official extract
Charity Area Of Operation
- Geographic Area Type
- Country
- Geographic Area Description
- United States
- Parent Geographic Area Type
- Continent
- Parent Geographic Area Description
- North America
- Welsh Ind
- No
- Geographic Area Type
- Region
- Geographic Area Description
- Throughout England And Wales
- Welsh Ind
- No
- Geographic Area Type
- Country
- Geographic Area Description
- Germany
- Parent Geographic Area Type
- Continent
- Parent Geographic Area Description
- Europe
- Welsh Ind
- No
- Geographic Area Type
- Country
- Geographic Area Description
- Italy
- Parent Geographic Area Type
- Continent
- Parent Geographic Area Description
- Europe
- Welsh Ind
- No
- Geographic Area Type
- Country
- Geographic Area Description
- Spain
- Parent Geographic Area Type
- Continent
- Parent Geographic Area Description
- Europe
- Welsh Ind
- No
04 Official extract
Charity Classification
- Classification Code
- 103
- Classification Type
- What
- Classification Description
- The Advancement Of Health Or Saving Of Lives
- Classification Code
- 201
- Classification Type
- Who
- Classification Description
- Children/young People
- Classification Code
- 302
- Classification Type
- How
- Classification Description
- Makes Grants To Organisations
- Classification Code
- 102
- Classification Type
- What
- Classification Description
- Education/training
- Classification Code
- 207
- Classification Type
- Who
- Classification Description
- The General Public/mankind
- Classification Code
- 203
- Classification Type
- Who
- Classification Description
- People With Disabilities
- Classification Code
- 306
- Classification Type
- How
- Classification Description
- Provides Services
- Classification Code
- 308
- Classification Type
- How
- Classification Description
- Sponsors Or Undertakes Research
- Classification Code
- 301
- Classification Type
- How
- Classification Description
- Makes Grants To Individuals
- Classification Code
- 307
- Classification Type
- How
- Classification Description
- Provides Advocacy/advice/information
- Classification Code
- 104
- Classification Type
- What
- Classification Description
- Disability
05 Official extract
Charity Event History
- Charity Name
- ANISIA'S HOPE - FIGHTING BATTEN DISEASE
- Charity Event Order
- 1
- Event Type
- CIO registration
- Date Of Event
- 2026-09-21T00:00:00
06 Official extract
Charity Governing Document
- Governing Document Description
- CIO - FOUNDATION Registered 21 Sep 2026
- Charitable Objects
- THE OBJECTS OF THE CIO ARE FOR THE PUBLIC BENEFIT: TO PRESERVE AND PROTECT THE HEALTH OF CHILDREN, YOUNG PEOPLE AND ADULTS AFFECTED BY NEURONAL CEROID LIPOFUSCINOSES (NCL), COMMONLY KNOWN AS BATTEN DISEASE, INCLUDING CLN2 DISEASE AND RELATED FORMS BY; (1) PROVIDING OR ASSISTING IN THE PROVISION OF SUPPORT, EQUIPMENT, THERAPIES, AND SERVICES; (2) PROVIDING GRANTS OF FINANCIAL ASSISTANCE TO ORGANISATIONS AND INDIVIDUALS UNDERTAKING RESEARCH INTO THE CAUSES, TREATMENT, PREVENTION AND CURE OF BATTEN DISEASE AND TO PUBLISH THE USEFUL RESULTS OF SUCH RESEARCH; (3) ADVANCING THE EDUCATION OF THE PUBLIC, MEDICAL PROFESSIONALS AND CARERS IN ALL MATTERS RELATING TO BATTEN DISEASE, INCLUDING EARLY DIAGNOSIS AND AVAILABLE TREATMENTS.
07 Official extract
Charity Policy
- Policy Name
- Risk management
- Policy Name
- Campaigns and political activity policy and procedures
- Policy Name
- Investing charity funds policy and procedures
- Policy Name
- Safeguarding vulnerable beneficiaries
- Policy Name
- Conflicting interests
- Policy Name
- Complaints policy and procedures
- Policy Name
- Engaging external speakers at charity events policy and procedures
- Policy Name
- Social media policy and procedures
- Policy Name
- Complaints handling
- Policy Name
- Serious incident reporting policy and procedures
- Policy Name
- Paying staff
- Policy Name
- Volunteer management
- Policy Name
- Internal risk management policy and procedures
- Policy Name
- Financial reserves policy and procedures
- Policy Name
- Trustee conflicts of interest policy and procedures
- Policy Name
- Bullying and harassment policy and procedures
- Policy Name
- Investment
- Policy Name
- Safeguarding policy and procedures
- Policy Name
- Trustee expenses policy and procedures
- Policy Name
- Internal charity financial controls policy and procedures