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International Batten Disease Awareness Day is on Wednesday 9th June 2021, and we are planning to make it bigger than ever to raise awareness of Batten Disease.

Click here to download our Awareness day poster



Raising Awareness in Parliament

Building on the success of the ‘orange ties and scarves’ in parliament last year, we are hoping to repeat and develop this. 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!

We also have a lovely BDFA pin badge, decorated with orange ribbon for female MP’s (or men if they prefer!) this year.

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




Use these # for Awareness Day posts on social media

 Sir Ian Botham

Sir Ian has very kindly agreed to be filmed speaking about Batten disease, so that we can publish the film on our website and social media. We hope that Sir Ian will also publish the film on his own social media, so that we really get the message out about Batten disease. Sir Ian is a kind and generous supporter of the BDFA and we are privileged to be one of the charities that he supports through his grant making trust, Beefy’s Charity Foundation.

This is very exciting and if any of you know or have contact with other celebrities that might be able to help in the same way for awareness day then please do ask them.

The official Single of the Batten Disease Awareness campaign in now available to pre order on iTunes and pre save on Spotify
Also available on CD single from Beyond Vinyl
Beautiful Girl – Single by David McGovern…/beautiful-girl-single/1569160306
Release date FRIDAY 4th JUNE
Well done David, we cant wait to get our copy!

BDFA Fundraising Event
‘13 in whatever way to raise 13k for Awareness Day’

We are launching an exciting fundraising event for Awareness Day to raise much-needed funds for the BDFA. It is an event that we hope the whole family can be involved in!

What is the event?

There are 13 types of Batten disease and we are asking fabulous fundraisers to complete a challenge involving the number 13! It would be great if we can get a wide range of families involved, from across the spectrum of Batten disease. Here are some ideas;
Run/walk 13 miles or 13km
Cycle 13 miles or 13km
Run/walk 13 laps of a field
13 times running up and down the stairs each day for a week
13 press-ups a day
13 steps a day
Make 13 cakes to sell and host a virtual coffee morning
13 words in Braille read each day
13 walks round the block in the wheelchair
13 sensory sessions/engagements
Any other creative idea!

Whatever your 13, you can choose to do it in one day or over the week that includes Awareness Day, 7th – 13th June. You will be able to add yourself as a fundraiser to our Just Giving page and tell everyone what you are doing and encourage people to support you with donations, as you share your story on social media. It would be absolutely wonderful to have as many people in our Batten community involved, raising awareness and helping to raise funds for the continued work of the BDFA.

Just Giving page is now live, you can get to it HERE.



We are excited to announce a new furry member is joining the BDFA team. Buddy Bear is Boris’ brother and will be making his way to all newly diagnosed families this year. He is also available to buy for £12 plus postage and packing.

Have a look at our other items too to help support the BDFA.


Get to the shop HERE

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.