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.
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…
We are delighted to announce that Dr Zlatko Sisic has become the new BDFA Chair. Zlatko has joined the Board of BDFA as the Medical and Scientific Lead in February…
We are delighted to share our news bulletin, the first for some time, with you. We are very excited about our new partnership with the Maypole Project. The Maypole project…
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 diversify its income…
Do you support the BDFA on Amazon Smile? Its so easy and at no cost to you.
Here is how:
Shop at smile.amazon.co.uk, select your chosen charity and we’ll donate to your favourite charitable organisation, at no cost to you.
AmazonSmile is also available in the Amazon Shopping App to all AmazonSmile customers using supported Android devices.
Click on the link to the right and support us while you shop.