The Trustees of Batten Fighters Forever are currently registering BFF as a Charitable Incorporated Organisation (CIO) focussed on increasing awareness and raising funds to support the treatment and care of people with Batten Disease and to assist the families of children with Batten Disease.
The objects of the charity are:
- Providing information about Batten Disease and where practical help and support can be found;
- Raising public awareness about Batten Disease and how research into the disease and support for people with the disease, their families and carers will improve the conditions of life for people with Batten Disease;
- Making grants to:
- pay for personal care, equipment and home adaptations for people with Batten Disease;
- assist in the provision of practical help, advice, support and respite care for people with Batten Disease, their families and carers;
- fund research into Batten Disease and the treatment of the disease, provided the useful results of such research are published.
Once CIO registration is complete we will:
- Add a Grant Application page to the BFF website to enable families and others supporting children with Batten Disease to apply for grant assistance
- Liaise with the BDFA regarding funding requirements (specific research/ needs or unrestricted)
- Consider applications of other charities and organisations who support children and families with Batten Disease who may require grant assistance.
All fundraising will be for the purposes detailed above.