Our Mission
Our mission is to enable everyone who is affected by Batten disease to live life to the full and to secure the care and support they need until we find a cure. The BDFA offers informed guidance and support to families and the professionals who work with them as well as actively increasing awareness of the disease and funding future research to identify potential therapies and ultimately a cure.
Our Plans
a. Employ a full-time support and advocacy worker
b. Operate a Freephone helpline
c. Commission the first Batten disease Clinical Nurse Specialist in the UK
d. Operate a small grant scheme to help meet the needs of caring for a child or young person living with Batten disease.
e. Increase our research funding in the UK and worldwide into potential therapies and ultimately a cure.
Latest News
Virtual Warrior 5K for the BDFA
During the month of December Virtual Warrior are raising money for The Batten Disease Family Association (BDFA) to commemorate the life of a very special little girl named Amber, who sadly…
Ollie wins a WellChild Award
We are so thrilled to see Ollie Carroll will receive a Well Child award, congratulations to you all and Ollie's Army Battling Against Battens for your amazing efforts in raising awareness…
Francis Mills completes 297 mile ride from London to Paris
Francis Mills trained vigorously for the challenge, overcoming the loss of his specialist bike after it was snatched from his workplace in June. Left without his £550 white Trek bike,…
BATCure: Developing new therapies for Batten disease
BATCure is a 3-year research project funded under a European Union call (New Therapies for Rare Diseases). The goal of the project is to advance the development of new therapeutic…
