06/02/2026
💙 February 7th is PACS1 Awareness Day 💙
Today we’re shining a light on PACS1 Syndrome, a very rare genetic condition that affects development, communication and often comes with complex needs, including epilepsy.
For our family, PACS1 isn’t just a cause we support… it’s personal.
Our daughter Lara has PACS1, and she is the reason we founded Seizure Alert Australia.
Lara is full of personality, joy, and determination and if you know her, you’ll know one of her absolute favourite things in the world is the water park. Seeing her light up in moments like this reminds us why awareness matters so much.
“Lara brings so much joy to our lives, but PACS1 also comes with challenges most people never see. We’ve learnt to celebrate the beautiful moments, while navigating the hard ones and we hope by sharing Lara’s story we can help others feel less alone.” - Wendy (Lara's mum)
Today, we stand with every PACS1 family and every rare disease community.
You’re not alone. 💙