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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 this fabulous photo from Great Ormond Street Hospital Look out for our storytelling project 2022 with stories shared throughout the day.

We know several of you have written to your MP so we are looking out for their awareness posts. There are several buildings set to be lit up later.

We are super proud to have our very own awareness song this year sang by the talented Poppy Brownnutt, in memory of her cousins.

Look out later also for an exciting staff announcement! The BDFA team are all working on awareness day today please do email Lisa at,uk if we miss anything important and we will make sure it is shared 🥰

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

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doing to support us and who to thank.

Thank you for your support.