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Awareness day 2023 logo

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 2023

Click the button below to download the Awareness day poster

BDFA fundraising for Awareness day

We are launching our BDFA Show us your orange! for awareness day


Every year, our wonderful community turns social media orange to help raise awareness of Batten disease.

This year, we are aiming to go more orange than ever whilst raising crucial funds for the BDFA with the #ShowUsYourOrange Nominating Challenge launching on Monday 5th June!

The rules are simple:

  1. Take a selfie with or in something orange
  2. Share it on your social media along with the hashtag #ShowUsYourOrange and the link to our Awareness Day JustGiving page
  3. Nominate a friend to do the same!


When sharing your selfies and our JustGiving link, please do make a donation if you are able to and encourage your friends and family to do the same.

With each person taking part nominating their own friends to get involved, we believe we can reach an ever wider audience and use the power of social media to raise invaluable awareness as well as crucial funds.

Nominations don’t have to end with friends, why not also nominate a local celeb to get involved and get orange?

Feel free to get creative, how orange can YOU go?

Let’s see how far we can spread #ShowUsYourOrange by June 9th and how much we can raise for Batten disease Awareness Day 2023




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

Family stories- we need yours!

Over the last 3 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 the story yourself or we can arrange for Jenny, our storytelling editor, to contact you and do it over the phone.

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

If you are interested in telling your story please contact 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, we have created a template letter you can use if you need it 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.