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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

Incredible Efforts from Fundraisers

Incredible Efforts from Fundraisers

We are always humbled by the incredible efforts that our fundraisers go to, to raise awareness and vital funds for our work. Jenny Shackleton is the aunt of beautiful Amber…

Andrew Strauss Lands Top Cricket Job

Andrew Strauss Lands Top Cricket Job

Congratulations to our patron Andrew Strauss on being appointed Director of Cricket at the England and Wales Cricket Board, the top job in English cricket. We would like to thank…

Awareness Day – June 5th 2015

Awareness Day – June 5th 2015

On June 5th we would like to mark Batten Disease Awareness Day and we would love for you to help us turn the world orange! Without awareness our job of…


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