The Batten Disease Family Association will be holding their Annual General meeting on Saturday 25th June 2022. This meeting will be held virtually via Zoom meetings. Registration details and link for meeting will follow with agenda nearer to the time.…
We are very excited to share the news that our Awareness day single by 'Poppy' - "When You Were With Me" will be available on LIMITED EDITION CD SINGLE on 17th June, as well as digitally on 6th June 2022.…
The BDFA will once again have its own official Batten Disease Awareness Day song this year and it has been written and performed by Poppy Brownnutt, from Shipley West Yorkshire! Poppy, who is 15, wrote the song about her precious…
Here at the BDFA, we have exciting plans for awareness day and we really hope you can help support Batten disease and help us turn the UK orange to raise awareness on June 9th! There are so many ways you…
The BDFA was delighted to join international partner BDSRA and others for an enlightening and informative international session looking at the current research and treatment landscape for Batten disease, in the light of recent Dear Families The BDFA was…
We are pleased to be able to offer families in our Batten community the chance to virtually attend the BDSRA family conference again this year. The last 2 years have been brilliant events and the BDSRA work so hard to…
We are so pleased to share this update from the amazing Bertie’s Helpers!! Bertie’s Helpers has now delivered 100 Tesco food deliveries, including good quality ready-meals, to families in the Battens community! This includes to families whose child or children…
Dear all, We have been working with our international partners, the BDSRA, BDSRA Australia and Baza Retkih Bolesti to dissect recent developments in the batten treatment space. You will have read the letter from Taysha Gene Therapies published in the…
CLN1 & CLN7 Communities, We would like to bring to your attention this update regarding Taysha Gene Therapies involvement in both CLN1 & CLN7. We encourage you to read the community letter below from Taysha and reach out to us…
One parent who previously benefitted from having a Peer Befriender said… “My Peer befriender has been an absolute lifeline. Since the diagnosis I have felt very cut off and not wanted to socialise or see anybody. It’s so helpful to…