Each year on 9 June, the global Batten community comes together for International Batten Disease Awareness Day (IBAD), a day dedicated to raising awareness, remembering children and families impacted by Batten disease, and strengthening our collective commitment to research, support and hope.
In 2026, IBAD also marks the return of Forget Me Knot, BDSRA Australia’s awareness campaign that continues to grow into a global movement.
Launched in 2025, Forget Me Knot invites people to tie a simple knot somewhere visible, on a finger, wrist, school bag, car mirror, mailbox, fence, workplace or sporting equipment. It is a small act, but one carrying a powerful message: do not forget children living with Batten disease and the families walking beside them.
Every knot tied represents a child, a family and a story that deserves to be seen and remembered.
What began as an Australian awareness campaign has expanded internationally, with families, schools, workplaces, sporting clubs and community organisations around the world taking part. The campaign reflects something our community knows deeply: while Batten disease is rare, our community is global.
By standing together across countries and continents, we strengthen awareness, build connections and support the collaborations needed to improve outcomes for families.
Batten disease is a family of rare, severe and progressive neurodegenerative disorders that primarily affect children. Children are often born healthy and develop typically before symptoms begin to appear. Over time, many experience seizures, vision loss, language decline, cognitive and motor deterioration, and premature death. Batten disease is recognised as the most common form of childhood dementia.
This IBAD, we invite everyone to join us:
Tie a knot. Share a photo using #ForgetMeKnot. Start a conversation. Help ensure children living with Batten disease are never forgotten.
Together, every knot becomes a reminder that our community stands united in hope.
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