**** SAVE THE DATE **** The BDFA Family Conference is back in 2022! Saturday 11th- Sunday 12th June 2022 Due to current times, the BDFA are planning that this conference will be a hybrid event, so families can join us…
Join Dr Ruth Williams, Consultant Children’s Neurologist for a session on epilepsy and Batten disease. Monday 9th August @ 5pm, on Zoom Please RSVP to admin@bdfa-uk.org.uk for the link. Hope to see you there!
Here at the BDFA we want to say a MASSIVE THANK YOU to all of our families in the UK who attended the BDSRA annual family conference this past weekend, and thank you to all the other families all over…
The BDFA is delighted to partner again with the BDSRA (Batten disease support and research association) for their annual conference that is yet again online. As last year, we will be sending out conference boxes full of activities and conference…
The official Single of the Batten Disease Awareness campaign in now available to pre order on iTunes and pre save on Spotify!! After reaching No.2 in the Official UK Physical Charts with his cover of East 17’s classic Stay Another…
Notice is hereby given that the 2020 Annual General Meeting of the Batten Disease Family Association will be held via Zoom video-conferencing on Saturday 12 June 2021 at 10:00. Given that the Covid-19 restrictions are only in process of being…
HAVE YOU SIGNED UP YET???? ‘13 in whatever way to raise 13k for Awareness Day ’We have launched an exciting fundraising event for Awareness Day to raise much-needed funds for the BDFA. It is an event that we hope the…
The BDFA team recently had a meeting to plan events around this year’s Awareness Day! The following are ideas that we came up with and we hope that as many of our families as possible will join in with them.…
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 child with neurodegenerative disease, such as Batten disease. This webinar…
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 neurological functions and we have until possibly early teens with…