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Exciting Update From Theranexus Regarding Clinical Trial In 2023 For CLN3

Exciting update from Theranexus regarding clinical trial in 2023 for CLN3 Please read the article below

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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…

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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…

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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,…

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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…

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WOULD YOU LIKE A PEER BEFRIENDER TO TALK TO, SUPPORT YOU AND TO HELP IMPROVE YOUR EMOTIONAL WELLBEING?

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…

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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…

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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…

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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…

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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…

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