# BATTEN DISEASE FAMILY ASSOCIATION CIO

## Details

- **Country:** England &amp; 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&amp;p_p_lifecycle=0&amp;p_p_state=maximized&amp;p_p_mode=view&amp;_uk_gov_ccew_onereg_charitydetails_web_portlet_CharityDetailsPortlet_regId=1205650


## Contact

- **Address:** 10 Nidderdale Walk, Baildon, SHIPLEY, West Yorkshire
- **Postcode:** BD17 6TW
- **Phone:** 07354 486586
- **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



## Geography

- Northern Ireland
- Scotland
- Throughout England And Wales





## Trustees

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




