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.…
National Day of Reflection 2021 On this national day of reflection, one year since the first lockdown began on 23rd March 2020, we are remembering all those have been bereaved whatever the cause, especially those within our own batten community.…
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 2020. He graduated from the Medical School in Belgrade in…
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 has been running our Sibling Sanctuary and we are pleased…
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 and build a sustainable future, offering the very best we…
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…