Alara's Batten Battle - CLN6

28/07/2026

🩷🩵💜💚💛 Update 💛💚💜🩵🩷

We now have an accessible bathroom! 🤍

A massive thank you to Dean from Dean Evans Construction and his amazing team for giving Alara a bathroom that is safe, accessible and will make such a big difference to our everyday lives.

From the start, Dean gave us a timeframe, and he stuck to it.
The whole renovation ran so smoothly, and I honestly don't think I've ever seen such a clean renovation! Every day the tradies cleaned up after themselves, and there wasn't a scrap of rubbish left behind.

We're so grateful to everyone who helped make this happen. Thank you for all of your hard work and for creating such a beautiful space for Alara.

Shout out to:
Dean Evans Constructions
Mitch Pollard Wall and Floor Tiling
Ian Toole Plastering
Goulburn City Electrical
ARW Plumbing
Brendan Hogan Painting
Swiftwood Tiles and Bathrooms

Thanks to Mackenzie for testing out our changing space and showing how big our new shower is 😂

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 😜 👑