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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

Disability Living Allowance Application

Disability Living Allowance Application

We are writing to the Director General of the Department for Work and Pensions to complain about the Disability Living Allowance application process and renewal process. There are a number…

Claudia Alejandra Soto – Fundraising

Claudia Alejandra Soto – Fundraising

Claudia Alejandra Soto has just completed a Tough Mudder Challenge, ahead of doing the London 10K in July. If you would like to support her, visit her Just Giving Page!

WOLF Run 2015 – Jenny Shackleton

WOLF Run 2015 – Jenny Shackleton

Jenny Shackleton ran the WOLF Run to raise money for the BDFA. Although really cold, she did an amazing job and completed the course! Have a watch of the video!…


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