$140,000 Raised at our Inaugural “A Rare Affair”

Cure SCN2A’s inaugural A Rare Affair has raised an extraordinary $140,000, bringing our community one meaningful step closer to a future where children and families affected by SCN2A-related disorders have access to effective treatments and, ultimately, a cure.

Held on 24 March 2026 at Pilu at Freshwater, the evening brought together our local community and friends of Cure SCN2A for an unforgettable night of generosity, connection and purpose.

We were honoured to welcome Jonny and Rachael Casella, the powerhouse couple behind MacKenzie’s Mission, as guest speakers. In a deeply moving chat, they bravely shared the story of their daughter MacKenzie and her diagnosis of spinal muscular atrophy (SMA), and how they have turned her legacy into meaningful change for families across Australia.

Scott Tindal shared Jack’s diagnosis and what living with an SCN2A-related disorder has meant for our family. Speaking publicly about such a personal journey is not easy, but Scott’s honesty gave guests a powerful insight into the urgency behind our mission and the determination that drives it.

The evening was expertly guided by our event MC, Edwina Bartholomew, whose warmth and care brought the room together in support of the cause.

A special thank you to Giovanni and Marilyn for hosting us so beautifully at Pilu at Freshwater. Their generosity, together with the extraordinary Pilu team, created a truly special setting for a night filled with hope and purpose.

The live and silent auction, together with our raffle, inspired remarkable support from the room. And what a lineup of prizes we had on offer! We are deeply grateful to every business and individual who donated prizes and experiences, and to every guest who bid, bought tickets and gave so generously. A special thank you to all of our auction and raffle sponsors, we truely couldn’t have done this without you.

To our volunteers, and everyone who contributed their time, energy and expertise: thank you. Your hard work helped turn a beautiful gathering into vital support for SCN2A research.

Most of all, thank you to everyone who attended A Rare Affair. Your support sends a powerful message to families living with SCN2A-related disorders, that there is a community determined to find a cure.

Every dollar raised will help advance Cure SCN2A’s mission to fund research, build awareness and accelerate the path towards the first gene therapy treatment for SCN2A-related disorders.