Dear all, As we approach the end of the year I would like to express our grateful thanks to all the families in our community for their tremendous support this year. It has been a challenging year for the BDFA,…
Thank you so much for supporting me and helping me to feel welcomed (and useful!) in my role. I have enjoyed a busy 6 months in post and feel I am developing a stronger understanding of who we support and…
Dear CLN3 Community, Please find below some information about the ongoing research into CLN3, the Miglustat trial hopefully coming next year, and a link to the BDSRA Australia project looking to speech and language in individuals with Batten disease .…
Dear Families,As per our communication on social media yesterday the BDFA would like to invite you to attend a short call on Thursday 21st December at 12pm.The purpose of the call is to update you on our PR and…
A grand total of £12,242.50 including Gift Aidhas been raised through our Big Give Christmas Challenge 2023!Thank you! We would like to say a huge thank you for your support in raising such a phenomenal amount, which will fund our…