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 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…
We are pleased to be offering three (free) training slots with Sarah Kenrick, this is for professionals working with children/young people and adults with CLN3. These training slots will be held over Zoom. If you feel this would be beneficial…
We have adapted the day of Peer Befriending training to Tuesdays to suit parent availability. We have a few spaces left and would love to hear from you if you would like to become a Peer Befriender for the BDFA.…
The BDFA are proud to launch a new Peer Befriending service to help support families in a way that only other parents of children with Batten Disease will be able to do. We’re so excited to be now seeking our…
BDFA STAFF NEWS The BDFA is delighted to introduce Mimi Petty as our new Peer Befriending Coordinator. Mimi is a bereaved parent and her son Bertie passed away in 2019 from CLN1 Batten disease. Mimi is already well known to…
Join the Global Chain of Lights! Here is how.... Show your support for #RareDiseaseDay by lighting up your home, office or school on 28 February! By coming together to #LightUpForRare we can raise awareness, show solidarity, and be part of…