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GOSH 1

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 admin@bdfa-uk.org,uk if we miss anything important and we will make sure it is shared 🥰

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