ACTION FOR BPAN

Charity number: 1210529
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

Action for BPAN supports individuals with BPAN (Beta-Propeller Protein-Associated Neurodegeneration), a rare neurodegenerative disorder. We fundraise for research, raise awareness, and provide support to families affected by BPAN. Based in the UK and operating globally, we collaborate with medical professionals and communities to improve lives and advance treatments and cures for BPAN.

What, who, how, where

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
  • The General Public/mankind
How the charity helps:
  • Makes Grants To Individuals
  • Makes Grants To Organisations
  • Provides Advocacy/advice/information
  • Sponsors Or Undertakes Research
Where the charity operates:
  • Throughout England And Wales
  • Australia
  • Canada
  • France
  • Germany
  • Guernsey
  • Isle Of Man
  • Italy
  • Jersey
  • Netherlands
  • Northern Ireland
  • Scotland
  • Spain
  • Sweden
  • Switzerland
  • United States

Governance

Registration history:
  • 17 October 2024: CIO registration
Organisation type:
CIO
Other names:

No other names

Gift aid:
Recognised by HMRC for gift aid
Other regulators:
No information available
Policies:
  • Bullying and harassment policy and procedures
  • Complaints handling
  • Complaints policy and procedures
  • Conflicting interests
  • Financial reserves policy and procedures
  • Internal charity financial controls policy and procedures
  • Internal risk management policy and procedures
  • 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
  • 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
Kelly Ann Sayers Ms Chair 16 September 2024
None on record
Nicole Harper Trustee 16 September 2024
None on record
Susannah Kemmis Trustee 16 September 2024
None on record
Schalk Visser Trustee 16 September 2024
None on record

Financial history

This charity was registered recently. It does not have to provide information until 10 months after its first financial period.

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 - FOUNDATION Registered 17 Oct 2024

Charitable objects

THE OBJECTS OF THE CIO ARE TO PRESERVE AND PROTECT THE GOOD HEALTH OF THOSE SUFFERING FROM BETA PROPELLER PROTEIN-ASSOCIATED NEURODEGENERATION (BPAN) BY:- MAKING GRANTS TO VETTED MEDICAL PROFESSIONALS TO CARRY OUT RESEARCH FOR A CURE OR TREATMENT OF THE CONDITION AND TO PROVIDE SUPPORT TO CAREGIVERS OF THOSE WITH BETA-PROPELLER PROTEIN-ASSOCIATED NEURODEGENERATION (BPAN); PROVIDING USEFUL INFORMATION FROM UK BPAN SPECIALIST DOCTORS, SIGNPOSTING AND HELPING NAVIGATE THE SUPPORT AVAILABLE BY SHARING PERSONAL EXPERIENCES TO ENSURE THEY CAN ACCESS SERVICES THAT MAY BE BENEFICIAL TO THEM; AND PROMOTING AWARENESS AND ADVANCE THE EDUCATION OF BETA-PROPELLER PROTEIN[1]ASSOCIATED NEURODEGENERATION (BPAN) FOR THE GENERAL PUBLIC AND HEALTH PROFESSIONALS USING A VARIETY OF DIFFERENT MEDIUMS.

Contact information

Address:
WESTFIELD LODGE
OLD MILL LANE
BRAY
MAIDENHEAD
SL6 2BG
Phone:
07966975279
Email:
engage@actionforbpan.co.uk
Website:

www.actionforbpan.com Open in new window