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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

Together For Short Lives – Animation

Together For Short Lives – Animation

A powerful animation created for Together for Short Lives by video marketing agency Hurricane Media is released today. The short film, We’re having a baby was produced pro bono for…

This Morning Appearence

This Morning Appearence

Recently the Harrison family appeared on ITV 1's This Morning as part of the Text Santa appeal. One of the charities supported is Together for Short Lives. As well as raising…

We collect STAMPS!

We collect STAMPS!

With Christmas Cards landing on your doorstep, its time to remind you that we can raise funds by collecting STAMPS! Support the Batten Disease Family Association (BDFA) by sending your…