Alara's Batten Battle - CLN6

08/06/2026

Tomorrow, 9th June, is International Batten Disease Awareness Day!

Tie a knot, put a ribbon in your hair, wear your Alara merch!

Start a conversation!

💚🧡

Batten Disease Support & Research Association Australia

25/05/2026

📣 International Batten Disease Awareness Day | Forget Me Knot 🪢
📆 JUNE 9TH

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.

'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.

Share your knot on social media using the hashtag and tag to help spread awareness far and wide.
..behind every breakthrough is a child waiting for a cure.

29/04/2026

Huge thanks to Kristen Kaiser Gray at CureBatten for raising awareness and funds for the new clinical trial for CLN6 kids in the US.

If you would like to donate, please go to
https://www.curebatten.org/

1 like. "Southern California mom works to fight Batten Disease"

13/04/2026

Last week Alara had her first visit to the Royal Easter Show!

Whilst we only found 1 ride she could go on, she was able to stay in her wheelchair which made it so easy for us.

Her favourite part was definitely seeing Hephner.

Shout out to Fletchers Ark for making this happen and helping us get there 🥰

If you ever get the chance, please head out and support this local business.
They definitely go above and beyond for us locals.
And who wouldn't want to meet the Alpaca who sneezed on the king 😜 👑

26/03/2026

💜 Epilepsy Awareness 💜

Today, March 26, is Purple Day, a global initiative dedicated to raising awareness of epilepsy, dispelling myths, and increasing support for those living with the condition. 💜

Epilepsy is one of the most common and defining features of Batten Disease. For some subtypes, seizures are the first obvious symptom that starts the journey towards diagnosis, while for others, seizures will begin later in the progression. Seizure types can vary and increase over time. Symptom management can be tricky for those affected, often requiring multiple anti-epileptic medications, Epilepsy Management Plans and training for carers, teachers and other support staff.



Batten Disease Support & Research Association Australia

Our photos below are from the amazing Batten Disease Family Conference 🧡🩵

20/03/2026

Our equipment library is definitely growing. And these are just Alara's seating choices 😅

19/03/2026

All dressed up for Harmony Day celebrations at school 🧡🧡

09/03/2026

🏊‍♀️ Hydro Physio Recommendations 🏊‍♀️

We've found our unicorn physio, now we need one who can do hydrotherapy locally.

Please throw all of your recommendations at me!

* Due to the nature of Alara's condition, this needs to be a physiotherapist. I know a lot of supprt workers take clients to the pool, but we are looking for a physio who will be able to work alongside our current therapist.

Throw back to when Alara was 2 dressed as Emma Wiggle 💛🖤
Her hair took forever to grow 😅

28/02/2026

📆 February 28th is Rare Disease Day.

Each year, we recognise Rare Disease Day on the last day of February with people and organisations all around the globe. A combined voice, raising awareness for change for over 300 million people living with a rare disease - that's more than you can imagine.

70% of rare diseases start in childhood. Right now, in Australia there are more than 50 children and young people living with the devastating neurodegenerative condition called Batten disease. The impact of this disease on every aspect of their life and those around them is unimaginable and immeasurable. BDSRA Australia continues to strive to make a practical difference to those battling Batten, the informal and professional supports and those searching for a cure.

Post, comment, share - whatever you can! - to help raise awareness for rare disease and Batten disease.

For more information go to Rare Disease Day or visit the official website: https://www.rarediseaseday.org/

Batten Disease Support & Research Association Australia
Rare Disease Day

28/02/2026

📆 February 28th is Rare Disease Day.

Each year, we recognise Rare Disease Day on the last day of February with people and organisations all around the globe. A combined voice, raising awareness for change for over 300 million people living with a rare disease - that's more than you can imagine.

70% of rare diseases start in childhood. Right now, in Australia there are more than 50 children and young people living with the devastating neurodegenerative condition called Batten disease. The impact of this disease on every aspect of their life and those around them is unimaginable and immeasurable. BDSRA Australia continues to strive to make a practical difference to those battling Batten, the informal and professional supports and those searching for a cure.

Post, comment, share - whatever you can! - to help raise awareness for rare disease and Batten disease.

For more information go to Rare Disease Day or visit the official website: https://www.rarediseaseday.org/