General: 07354 486 586   |   Fundraising: 07511 821 181   |   Support: 0800 046 9832  
Introducing BDFA Mum’s Chat

The BDFA are hosting a MUM’S CHAT (for mum's of children and young people of all CLN variants) Tuesday 22nd August 8pm This will be held once a month on Zoom and is a chance for mums from the BDFA…

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Children’s Hospice Grant Campaign, News From Together For Short Lives

Dear Families, Many families in the Batten community rely on their local children's hospice for essential support that mainstream NHS services are already struggling to provide. The news from Together for Short Lives regarding the ending of NHS England grants…

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BDFA Family Support Service – Update

Dear Families, It is with sadness that we are writing to announce that our dedicated colleague Sian Fisher left her role as the Head of family support at the BDFA. Sian’s last day was on Friday last week. We are…

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New Book Available ‘Max And Abby’ By Dr Ineka Whiteman

The BDFA are pleased to introduce a wonderful new book by Dr Ineka Whiteman in association with the Batten Disease Support & Research Association Australia. The book called 'Max and Abby' is told through the eyes of big sister Abby,…

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BDFA Staff News-Head Of Family Support, Sian Fisher Leaving In June

Dear All, I am saddened to announce that Sian Fisher, our wonderful Head of Family Support and Advocacy, is leaving the BDFA in early June. Sian is moving to Winston’s Wish, the UK’s childhood bereavement charity, as a bereavement support worker. Sian explains…

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First Peer Befriending Weekend Retreat

The BDFA held its first Peer befriending retreat this past weekend in Surrey, gathering together some of our wonderful peer befriending volunteers for some training and connection time as a team. We have also just started our second Peer Befriending…

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Join Our Friendly Dads Chat Session On Thursday 2nd February At 8pm On Zoom- Date Has Changed!

🚹 Join our friendly Dads chat session on Thursday 2nd February at 8pm on zoom. 🚹 The Dads Chat group is a chance to meet with other dads of children with Batten disease. It’s led by one of our trained…

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Save The Date! BDFA Family Conference 2023!

Following on from our successful family conference in September, we have set the date for our Family conference in 2023! We had some wonderful feedback from the conference, so we are working hard make 2023 even better. One big change…

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Would You Like To Become A BDFA Peer Befriender? Could You Give Support To Another Family Living With Batten Disease?

Why not kick off 2023 with a new challenge to help support other Batten families! The course starts on Tuesday 24th January 2023, where you will have expert training and become a vital part of our wonderful Peer befriending volunteer…

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ITS AWARENESS DAY THIS WEEK!!!!

The BDFA are running two sessions for families this year on awareness day. At 4pm we are holding a special (and probably very orange!) edition of our virtual family cuppa get together on Zoom.Join us and tell us what you…

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Donate to the work of the BDFA

With your support we can help support families living with the devastating diagnosis of Batten disease

The BDFA receives NO funding from Government and are only able to carry out our work because of the strong commitment of our volunteers and fundraisers.

Thank you so much for your support

How your donation can help

£5 a month
provides a support and information
folder for a newly diagnosed family

£20 a month

helps to run our family support services

£50 a month
enables us to run training workshops
for professionals to educate them on
Batten disease