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 range of cures.
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
Katie’s Fundraising Story
Katie’s Fundraising Story My family has recently found out devastating news that my amazing nephew has a terminal disease, CLN6 Battens disease, which will progressively take his vision, motor and…
New Head of Fundraising, welcome Liz Brownnutt
The BDFA team is delighted to announce that Liz Brownnutt, our new Head of Fundraising starts today. This is a key appointment as the charity moves to diversity its income…
We wanted to wish everyone in the Batten community a very Merry Christmas and a Happy New Year! Our office is closed from tomorrow, Tuesday 22nd Dec till Monday 4th…
The Amber Trust launches major new music service, With Music In Mind in association with the Amber Trust
With Music in Mind by Amber Trust Monday 16 November 4-5pm With Music in Mind is The Amber Trust's pioneering new music service for families who have a visually impaired…
Notice of Annual General Meeting of the Batten Disease Family Association 2020
Notice of Annual General Meeting of the Batten Disease Family AssociationNOTICE IS HEREBY GIVEN that the Annual General Meeting of the Batten Disease Family Association will be held virtually via…
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