# BATTEN DISEASE FAMILY ASSOCIATION CIO

## Details

- **Country:** England & Wales
- **Charity number:** 1205650
- **Other names:** BDFA
- **Status:** Registered
- **Legal form:** CIO
- **Registered:** Nov. 9, 2023
- **Register:** https://register-of-charities.charitycommission.gov.uk/en/charity-search/?p_p_id=uk_gov_ccew_onereg_charitydetails_web_portlet_CharityDetailsPortlet&p_p_lifecycle=0&p_p_state=maximized&p_p_mode=view&_uk_gov_ccew_onereg_charitydetails_web_portlet_CharityDetailsPortlet_regId=1205650


## Contact

- **Address:** 10 Nidderdale Walk, Baildon, SHIPLEY, West Yorkshire
- **Postcode:** BD17 6TW
- **Phone:** 07354486586
- **Email:** admin@bdfa-uk.org.uk
- **Website:** www.bdfa-uk.org.uk



## Activities

**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.

**Activities:** 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




## Classification

- **How:** Provides Services, Provides Advocacy/advice/information, Sponsors Or Undertakes Research
- **What:** Education/training, The Advancement Of Health Or Saving Of Lives, Disability
- **Who:** Children/young People, People With Disabilities



## Areas of operation

- Northern Ireland
- Scotland
- Throughout England And Wales



## Finances

| Period end | Income | Expenditure | Assets | Employees |
|---|---|---|---|---|
| Aug. 31, 2024 | £0 | £0 | — | — |



## Trustees

- **Nigel Lorenzo Nicholls** (Chair) — appointed May 7, 2025
- Duncan Jamie MacGregor Mann — appointed June 21, 2025
- Lucy Anne Rodrick — appointed June 21, 2025
- Mark Alexander Thompson — appointed Nov. 9, 2023
- Richard Jonathan Oakley — appointed June 21, 2025
- Robert James Peter Thompson — appointed Nov. 9, 2023
- Simon David Sewart — appointed Nov. 9, 2023