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 recipients: https://battenresearch.org #BattenResearch #BrainAwarenessWeek #BattenDisease #RareDisease #Science #Research #Clinical #Grant"
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 Initiative. Big news is coming soon! Visit the GRI website:…
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 therapies, TTX-381 is looking to address vision loss and has…
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 advocacy for families over the last 18 months as a…
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 and the fear of the treatment not being approved by…
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 has been a challenging year in some respects, but we…
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 this vital role, and we are excited to have him…
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 our community for your support in raising such a phenomenal…
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 in a week! Donations made to our campaign via our…
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 supporting the work of the Batten Disease Family Association (BDFA).…
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