Batten Fighters Forever is 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.All fundraising will be for the purposes detailed above.

Why Batten Fighters Forever?

Annabelle chose the name Batten Fighters Forever because its abbreviation is BFF, which also stands for Best Friends Forever. This very much captures her brave spirit and the need for us to stick together in the fight ahead. We will use BFF to raise awareness of the disease and to raise funds towards research. We know there will be challenges ahead, but with the support of our BFFs we will get though them, and pray that a treatment – or better still, a cure – is on the horizon.