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Awareness day 2022 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 2022

Click the button below to download the Awareness day poster


BDFA 13for13 fundraising challenge for awareness day
‘13 in whatever way to raise 13k for Awareness Day’

We are re-launching our BDFA 13for13 fundraising challenge for awareness day, following its great success last year! 

What is the 13for13 challenge?

There are 13 types of Batten disease and we ask fundraisers to complete a challenge involving the number 13. Challenges can range from running 13 miles, to reading 13 words in braille each day, from walking 13 laps of a field to doing 13 times round the block in a wheelchair. The concept is to include all ages and abilities.

Last year, we had a couple of schools undertake the challenge, with one school doing a 13 obstacle course for the pupils, the staff completed a half marathon and together they raised over £3,000 for the BDFA! We shall be contacting a number of schools to see if they will consider taking part this year.

Also last year Amanda’s dog Ronnie took part (he met 13 different types of dogs on 13 walks) and also myself and my husband did a half marathon (13 miles) along the Leeds to Liverpool canal. Setting up our challenges early on in the campaign seemed to really encourage others to get involved, so it would be great if we could lead on this again this year.

Fundraising is important for all of us as the BDFA team, as it helps to ensure that the work of the BDFA is not only maintained, but that it can grow and develop. It would therefore be amazing if any of you would like to kick-start our 13for13 challenge this year by setting your own challenge up.

Please do speak to me if you would be interested in supporting this fantastic BDFA fundraiser.

Some of us are already undertaking challenges this year which is great! I am taking on the Great North Run in September, Amanda and Sian are doing Royal Parks half marathon in October and Zlatko is doing the RideLondon-Essex 100 miles this month. This is all wonderful and it’s fantastic to see the team getting involved in fundraising.

If you think you might be able to help by taking on a 13for13 challenge this awareness day then we would love to hear from you!

Thank you so much.

Raising Awareness in Parliament

Building on the success of the ‘orange ties and ribbons’ in parliament last year, which was another great success, we are running this campaign again, but with more orange items! This year, you can send an orange tie and socks or a lovely BDFA pin badge, decorated with orange ribbon for female MP’s (or men if they prefer!)

If you are interested in approaching your local MP (or Mayor) to represent Awareness day in this way then do let us know. We can provide a template letter for you to use and of course the tie, socks and ribbons to send. We will also send you an orange postage bag to send it in, so it will stand out from the rest of their post!

Please contact Lisa, for more information and to request your ties, socks and ribbons.






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

Family stories- we need yours!

Over the last 2 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 Amanda,


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




BDFA group Zoom sessions 

We are hoping to run some zoom sessions during the week again this year, including the Family virtual cuppa and bereaved family group session. More news on dates and times of these sessions to follow.



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 to the BDFA please click the button below which will take you Paypal.

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

Please do leave us a note about the donation or fundraising so we know what you have been

doing to support us and who to thank.

Thank you for your support.