Our Mission
The BDFA’s mission is to enable everyone who is affected by Batten disease to live life to the full and secure the care and support they need until we find a cure.
The BDFA offers informed guidance and supports families and 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.
The BDFA works across the rare disease sector to influence change in policy and processes as a collective voice.
Latest News
BIG RESEARCH NEWS from the Batten Disease Global Research Initiative
Following a robust selection process, the Batten Disease Global Research Initiative has awarded research grants to six recipients totaling USD $320,000! Tune in next week as we unveil our grant…
Brain Awareness week! Find out more about the Batten Disease Global Research Initiative
It’s Brain Awareness Week – a global campaign to foster public enthusiasm and support for brain science. Let’s take some time to learn more about the Batten Disease Global Research…
Tern Therapeutics press release and update on progress in the TTX-381 and TTX-181 clinical trials
Tern Therapeutics have published a press release and written a community letter to update you on their progress in the TTX-381 and TTX-181 clinical trials. These are AAV9 based gene…
Sarah Kenrick takes up position as Head of Support and Advocacy for BDFA
We are delighted to announce that Sarah Kenrick has formally joined the BDFA team as our ‘Head of Support and Advocacy’ from 1st February. Sarah has been providing support and…
Channel 4 News highlight current NICE re-evaluation of Brineura
Last night, Channel 4 News ran an excellent four-minute feature on the current NICE re-evaluation of Brineura, highlighting the impact that the prolonged process is having on our CLN2 Community…
Latest News
Christmas message and round up from BDFA CEO
Dear all,As we approach the end of 2024, I would like to express our sincere thanks to all the families in our community for their continued support this year. It…
Welcome Philip Walker as our new Trusts and Foundations Fundraising officer
We are thrilled to announce that Philip Walker has joined the BDFA team as our new Trusts and Foundations Fundraising Officer. Philip brings a wealth of expertise and enthusiasm to…
Big Give Christmas Challenge 2024 total announced!
A grand total of £21,660 including Gift Aid has been raised through our Big Give Christmas Challenge 2024!We would like to take a moment to convey our sincere thanks to…
Big Give Christmas Challenge 2024 – Now live!
Our Big Give Christmas Challenge campaign page is now open and doubling donations! We are aiming to raise £15,000 to go towards our Family Support Service and New Bereavement Project…
BDFA Christmas cards now on sale!
The BDFA Christmas card packs are now available for purchase in our online shop! This years card design features some of our amazing Batten families. All proceeds go directly towards…
Visit the online shop to help support the work of the BDFA
