BATTEN DISEASE FAMILY ASSOCIATION CIO

Charity number: 1205650
Recently registered

Charity overview

This charity has been recently registered - it does not need to update its information until 10 months after its first financial period ends

Activities - how the charity spends its money

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

Income and expenditure

Data for financial year ending 31 August 2024

Total income: £0
Total expenditure: £0

People

4 Trustee(s)

Employees with total benefits over £60,000

No information available

Fundraising

No information available

Trading

This charity does not have any trading subsidiaries.

Trustee payments

No trustees receive any remuneration, payments or benefits from the charity.

What, who, how, where

Main way of carrying out purposes is grant making
What the charity does:
  • Education/training
  • The Advancement Of Health Or Saving Of Lives
  • Disability
Who the charity helps:
  • Children/young People
  • People With Disabilities
How the charity helps:
  • Provides Services
  • Provides Advocacy/advice/information
  • Sponsors Or Undertakes Research
Where the charity operates:
  • Throughout England And Wales
  • Northern Ireland
  • Scotland

Governance

Registration history:
  • 09 November 2023: CIO registration
Organisation type:
CIO
Other names:
  • BDFA (Working name)
Gift aid:
No information available
Other regulators:
No information available
Policies:
  • Complaints handling
  • Conflicting interests
  • Investment
  • Paying staff
  • Risk management
  • Safeguarding vulnerable beneficiaries
  • Volunteer management
Land and property:
This charity does not own and/or lease land or property

Trustees

Trustees are the people responsible for controlling the work, management and administration of the charity on behalf of its beneficiaries. Generally trustees are treasurer, chair, board member etc. The trustees are responsible for keeping this list up to date and can do this by updating their details as they happen through the online service

4 Trustee(s)

Name Role Date of appointment Other trusteeships Reporting status of other trusteeships
Dr Zlatko Sisic Chair 09 November 2023
BATTEN DISEASE FAMILY ASSOCIATION
Received: On time
Robert James Peter Thompson Trustee 09 November 2023
None on record
Mark Alexander Thompson Trustee 09 November 2023
None on record
Simon David Sewart Trustee 09 November 2023
None on record

Financial history

This is a recently registered charity and the chart shows the financial history since registration

Financial period end date

Income / Expenditure 31/08/2024
Total gross income £0
Total expenditure £0
Income from government contracts N/A
Income from government grants N/A

Accounts and annual returns

This is a newly registered charity - accounts and annual return not required yet. The charity does not need to update its information until 10 months after its first financial period ends.

Governing document

Governing document

Details of the type of governing document the charity has and when it was established.
It is not the full text of the charity's governing document.

CIO - ASSOCIATION Registered 09 Nov 2023

Charitable 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.

Contact information

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

www.bdfa-uk.org.uk Open in new window