The BDFA provides support, advocacy and information to children and young people with Batten disease and supports their whole family.

On Thursday 9th June 2022 it is international Batten Disease Awareness Day and the BDFA have a week of awareness events planned! We are also seeking to raise funds for the continued work of the BDFA and so we are launching this exciting event for anyone to get involved in and support.

What is the event?

There are 13 types of Batten disease and we are asking fundraisers to complete a challenge involving the number 13! 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, 6th - 12th June. You can add yourself as a fundraiser to our page and tell everyone what you are doing and encourage people to support you with donations as you share your story on social media.

Please join us in this event and help to raise funds for the BDFA.