General: 07876 682589    |   Fundraising: 07745 210212   |   Support: 0800 046 9832  
BDFA Birthday Event Saturday 20th November 2021- Join Us To Celebrate!

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…

Read More
NCL 2021 Edition Conference Debrief And Summary And Ask An Expert- Sign Up Now

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…

Read More
BIG NEWS – BDFA Batten Befrienders Launch

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…

Read More
BDFA CHRISTMAS CARDS ON SALE NOW!!

       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…

Read More
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

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)…

Read More
Join Our Team- Family Support Worker & Community Fundraiser

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…

Read More
Pride Of Batten Awards 2021

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…

Read More
Join Our Team- Community Fundraiser

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…

Read More
BDFA Christmas Card Competition

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,…

Read More
London Marathon 2021

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,…

Read More

Make a donation:

To make a donation to the BDFA please click the button below which will take you Paypal.

All donations help us to provide the best support we can to families affected by Batten Disease.

Please do leave us a note about the donation or fundraising so we know what you have been

doing to support us and who to thank.

Thank you for your support.