UK zoom session with Professors Jon Cooper (Washington University) and Sara Mole (UCL) Come and find out all about the presentations at the NCL 2021 conference (held recently in St Louis in the US) and about the latest research into…
We have big news, long post alert, but so worth it! It’s national befriending week this week and what better time to announce that we have secured funding for a new peer befriending project, sitting at the heart of the…
Our amazing Christmas cards are on sale now in the BDFA shop on the website. You can buy the cards in a pack of 10, including 5 designs by our winner, 16 year old Annabelle, and 5…
Do you have a young person in full time education coming up to the age of 16 or beyond? You may be able to claim Universal Credit worth a significant extra income for your young person. Jayne Knights (benefits consultant)…
Fancy working for the BDFA? We currently have 2 job opportunities open to join our team. We are looking for a family support worker and a community fundraiser. Community Fundraiser Permanent, Part-time, 21 hours a week https://www.charityjob.co.uk/jobs/the-batten-disease-family-association/community-fundraiser/779545?tsId=2 Family Support Worker…
We are pleased to announce an exciting new annual BDFA initiative, the Pride of Batten Awards This is your opportunity to highlight the very best practice across the UK. Who is going the extra mile for your family member with…
We are seeking an experienced Community Fundraising Officer to join the Fundraising Team at the BDFA. The BDFA is the only patient organisation in the UK for families affected by Batten disease, a rare and terminal neurodegenerative condition that affects…
Help us design our charity Christmas card for 2021! We are looking for some amazing Christmas designs from our batten community to feature on our Christmas card Be as creative as you like, paint, draw, do it as a team,…
Wow, can we talk about Sunday??!! We had 5 amazing runners in the London Marathon and 1 marvellous runner who completed it virtually in her local area. BDFA staff were there supporting with some of the runners family and friends,…
Tech For All - ipads for children and young people with a vision impairment We are really pleased to let you all know of an amazing new scheme being run by The Guide Dogs for the Blind Association called Tech…
