Jacob the Batten Warrior

06/27/2026

Lunch on the road, it’s kind of buggy so we didn’t want to put him in the grass.

06/25/2026

Prepping for camping involves a lot of math and figuring out how many buckets of blend we need to make. There’s a lot of other things to think of like how we’re going to fit all the stuff into the van? Are we going to have enough meds for however many day? Stuff like that but we’ll take on one challenge at a time.

06/09/2026

06/09/2026

This video showcases many of the amazing children who have been dia...

06/06/2026

🧡 INTERNATIONAL BATTEN DISEASE AWARENESS DAY | JUNE 9 🧡

👫 Real people at the heart of our mission 👫

Between now and June 9th we will bring you the faces of children and young adults whose lives have been changed by a rare, devastating neurological disease. Real faces of courage, strength, resilience and love. Real faces behind every diagnosis, every challenge, every milestone and every memory.

Every year on International Batten Disease Awareness Day, we ask you to help make these faces impossible to forget.

Batten disease steals skills, independence and precious time from children and young adults, but together we can raise awareness, fund vital research and bring hope to families facing this journey.

This year, we invite you to join our global Forget Me Knot campaign.

🎗️ Tie a knot.
📸 Share a photo
💙 Remember.
🏷 Tag us on Facebook OR on Instagram.

Tie a knot to honour a child or loved one living with Batten disease. Tie a knot to remember those who are no longer with us. Tie a knot as a symbol of support for the families who care, advocate and fight every day.

✴Every knot tells a story.
✴Every knot creates awareness.
✴Every knot is a promise to never give up the fight.

🪢 Tie. Share. Remember.
🪢 Ties that bind, symbols that speak.
🪢 A promise to never give up the fight.

Most importantly, please consider making a donation today. Research is our greatest source of hope for better treatments, improved quality of life and, one day, a cure.

Together, we can ensure no family faces Batten disease alone.

🧡 Donate via our website here:
https://bdsraaustralia.org/index-donate.php

05/10/2026

Happy Mothers Day!