We've been sharing quotes from our families in the lead up to International Batten Disease Awareness Day tomorrow Thursday 9th June.

Naomi, a bereaved mum who's daughter MacKenzie-Rose had CLN2. Naomi shares the heartbreak and raw emotion about her late daughter and her hopes of what awareness and understanding will bring for future kids.

BDSRA Australia is dedicated to improving the lives and well-being of patients and families affected by Batten disease through family support, funding vital research, and advancing education and awareness.