10/06/2026
A big acknowledgement to Kiaana and the advocacy and recognition that her story brings to spreading information and awareness about Batten's Disease.
Also known as 'childhood dementia', this genetic condition poses many challenges for individuals and families and spreading awareness and fostering connection go a long way to supporting others that live with Battens Disease and those who are not aware of what it is.
Kiaana has such an infectious personality that brings goosebumps to those around her; with her gorgeous smiles, her dancing skills and singing with those she loves. Kiaana continues to smash many expected trends with the progression of her condition and those moments where she is able to enjoy living life her way, is priceless.
Today is International Batten Disease Awareness Day.
This is Kiaana.
She is 31 years old. She loves music, beach drives, good coffee, laughter, adventures, and spending time with the people she loves.
She also lives with CLN3 Batten disease, a rare, terminal neurodegenerative condition that gradually steals vision, mobility, communication, memory, and independence.
When Kiaana was diagnosed, there were no treatments and very little hope.
Today, thanks to families, researchers, clinicians, advocates, and supporters around the world, progress is happening. Research is advancing. Clinical trials are underway. Hope is growing.
But there is still no cure.
This year we're supporting the Forget Me Knot campaign.
🧡 TIE a teal and orange knot.
🩵 SHARE a photo and help spread awareness.
🧡 DONATE if you're able to support research and advocacy.
Every conversation helps.
Every share reaches someone new.
Every donation helps move us closer to a future where no family has to hear the words, "There is nothing we can do."
For Kiaana.
For every family living with Batten disease.
For the future.
Batten Disease Support & Research Association Australia
Kiaana Brown