09/06/2026
We have had the privilege to work with Kiaana and her family over the past few years, supporting her nutritional care as part of her life with Batten Disease. If you've never heard of Batten Disease before, take this as your sign to learn something new!
Starting a conversation brings more awareness and understanding for families living with this rare neurodegenerative condition. And if you can spare a few dollars for a donation towards research, every little bit helps.
https://bdsraaustralia.org
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
