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.
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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- 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 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, admin@bdfa-uk.org.uk
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 admin@bdfa-uk.org.uk
Need to order BDFA merchandise for awareness day?
Place your order at the link below
If you have any questions, please contact Lisa admin@bdfa-uk.org.uk
Thank you all your support,
Best wishes
The BDFA Team