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…
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…
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…
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,…
The BDFA is delighted to announce the appointment of Sian Fisher as the charity’s new head of Family Support and Advocacy. Sian will be responsible for all aspects of support and will be tasked with developing our support and advocacy…
We have moved!!! Yesterday we got the keys to the new lovely BDFA office near Kings Cross in London. It needs a little organising to make it feel like home but we are all really excited!
We are so excited to annouce that the BDFA will have a new home as of Monday 6th September just a short walk from Kings Cross station in London. Boxes are packed and ready to go, and we can't wait!…