Wednesday 15th December, 10.30-12.30- via zoom As part of our ongoing partnership with Rett UK and Demelza This is a session for families who may have a new diagnosis and are applying for DLA for the first time, or there…
It's the first year of these very special BDFA awards, celebrating best practice across the UK among people supporting and working with our children, young people and adults with Batten Disease.All our winners and those specially commended have been nominated…
We are so excited!! The Christmas Charity single in aid of the BDFA is released on Friday 3rd December and you can order a copy on limited edition CD now! See David's link below...We can't wait! Stay The Same (Featuring…
Starting on the 6th December Ecclesiastical will be giving away ten £1,000 grants each day for twelve days, to charities that have the most nominations! This award would mean a lot to us and be a great help, as we…
Happy Birthday BDFA!2021 marks the 20th anniversary of the BDFA becoming a registered charity! So to celebrate this mile stone for the BDFA, we are having a party!Sadly we would love it to be in person, but we will have…
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…