Today is to raise awareness and celebrate the people in our community but we also remember to families who have lost loved ones.
On Batten disease awareness day we remember all of the children and young people who we have lost due to this devastating disease.
This post is about the lovely little Bertie, who had CLN1. Thank you to Mimi and Andrew for sharing these lovely memories about him today.
#battenday2024 #battendisease #battendiseaseawareness
With your support we can help support families living with the devastating diagnosis of Batten disease
The BDFA receives NO funding from Government and are only able to carry out our work because of the strong commitment of our volunteers and fundraisers.
Thank you so much for your support
How your donation can help
£5 a month
provides a support and information
folder for a newly diagnosed family
£20 a month
helps to run our family support services
£50 a month
enables us to run training workshops
for professionals to educate them on
Batten disease