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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 can get involved, here are all the details.

Awareness day poster 2024

Click the button below to download the Awareness day poster

BDFA fundraising for Awareness day

We’re challenging our wonderful supporters to get involved with this year’s fundraising theme ‘B for Batten’ by taking on a fundraising challenge beginning with B! More details and some brilliant ‘B’ ideas coming soon.


Don’t forget to tag the BDFA and use these # on Awareness day

Family stories and words- we need yours!

Over the last 4 years, our Awareness Day storytelling project has been a huge success and been a really important part of the day. We are keen to continue with this storytelling project to build our library of Batten stories on social media and on our website.

There are many ways to tell your story and we are looking for perspectives from all family members in our community, including our bereaved community. You can write about Batten disease from your perspective, write a poem, take a video, send us a photo and tell us about your life with Batten.

We would love as many of you as possible to be involved to share on the day, and we are so grateful to everyone who has taken the time to share their own previously.

Please send to Lisa,

Lighting up Town Buildings

Over the years several families have used their influence to get local buildings lit up orange to help raise awareness, they look amazing! It is a great way your local landmark can get involved, and lots of builds do this regularly for other causes.

Get in touch with Lisa if you are planning to light up a building near you or if you need any assistance from us and don’t forget to post and send us your amazing photos on the day!

Contact Lisa at

Need to order BDFA merchandise for awareness day?
Place your order at the link below



If you have any questions, please contact Lisa

Thank you all your support,
Best wishes

The BDFA Team

Make a donation:

To make a donation please click the button to the right.  This link will then take you to a PayPal page where a donation direct to us can be made.

The amount you enter is your choice and PayPal can collect the funds from a debit or credit card account.

Thank you for your donation.