General: 07354 486 586   |   Fundraising: 07511 821 181   |   Support: 0800 046 9832  
28th June – International Neonatal Screening Day

Today is #InternationalNeonatalScreeningDay and the BDFA are proud to be members of the UK NBS Collaborative working towards meaningful change and extension to the UK newborn bloodspot programme. #INSD2022 Launched last year, the aim of this day is to raise…

Read More
Welcome To Dr Joanne Nightingale As Scientific Officer To The BDFA

We hope you will join us in wishing a warm welcome to Dr Joanne Nightingale as our new BDFA Scientific Officer. Jo has with a wealth of experience in scientific research and has worked in the lab doing pre-clinical research…

Read More
New Date For AGM

UPDATE NEW DATE of Annual General Meeting of the Batten Disease Family Association Notice is hereby given that the 2021 Annual General Meeting of the Batten Disease Family Association to be held via Zoom video-conferencing on Saturday 9th July 2022,…

Read More
Update From Theranexus On A New Treatment For CLN3

Thanks to Theranexus for sharing this update, and also for being one of our gold sponsors at the BDFA family conference in September. Theranexus is committed to support patients with rare neurological disorders by focusing all its research efforts on…

Read More

The BDFA is proud to offer an exciting new service for families. We have just completed our first Peer Befriending training course and have a team of peer befriender volunteers ready to support parents in the Battens community… ‘What is…

Read More
BDFA AGM Postponed

Dear all, Due to unforeseen circumstances, we have had to postpone our AGM that was being held on June 24th 2022. We are working on arranging a new date for the meeting and will communicate this new date with you…

Read More
Blanie’s Story

“In my heart I know it was her time and asked to take my girl home… Bee taught us so much during our time together and those lessons will be there for the rest of our life.” Blanie White’s family…

Read More
Matthew’s Story

“I would describe myself as very hands on dad and I love being able to look after Nicole and Jessica and their big brother Louis who is amazing.” Matthew Rich is dad to Louis age 11, Nicole age 10 and…

Read More
Rebecca’s Story

“Even when children seemed to be ‘locked-in,’ music could find a way in.” Rebecca Atkinson, researcher at the University of Brighton and Director of Chiltern Music Therapy tells how music therapy programmes have helped children with Batten disease I remember…

Read More
Laura Lee’s Story, Clinical Nurse Specialist

“The children and young people I have worked with, alongside their parents and carers, have taught me so much,” The inspirational Laura Lee is a Clinical Nurse Specialist at Great Ormond Street (GOSH), working with children and young people with…

Read More

Make a donation:

To make a donation please click the button to the right.  This link will then take you to a PayPal page where a donation direct to us can be made.

The amount you enter is your choice and PayPal can collect the funds from a debit or credit card account.

Thank you for your donation.