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Mimi’s Story

“We know that hope is so important” Mimi Petty writes about Bertie, her son who passed away from CLN1 Batten disease at the age of four. Mimi writes movingly about the devastation of a diagnosis of disease with “no treatment…

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International Batten Disease Awareness Day 2022 Is Here!

Happy #BattenDay2022 to all of the families in our Batten community and particularly thinking of those who are remembering their loved ones today. There is already a distinctly 'orange' buzz on social media. We are kicking off the day with…

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Join Us On Awareness Day For Batten Remembrance Cuppa With Bereaved Families

Thursday 9th June 2022 6pm -7pm This session is open to all members of the wider family who have been touched by the loss of a loved one to Batten disease. Please email for the link to join. If…

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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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We are very excited to share the news that our Awareness day single by 'Poppy' - "When You Were With Me" will be available on LIMITED EDITION CD SINGLE on 17th June, as well as digitally on 6th June 2022.…

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Exciting News! BDFA Will Once Again Have Its Own Official Batten Disease Awareness Day Song 2022

The BDFA will once again have its own official Batten Disease Awareness Day song this year and it has been written and performed by Poppy Brownnutt, from Shipley West Yorkshire! Poppy, who is 15, wrote the song about her precious…

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International Batten Disease Awareness Day New- June 9th 2022

Here at the BDFA, we have exciting plans for awareness day and we really hope you can help support Batten disease and help us turn the UK orange to raise awareness on June 9th! There are so many ways you…

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