Our community in action
Past events
A look back at our annual events calendar. Every walk, lunch and gala brings our community together, and raises the funds that drive STXBP1 research in Australia.
City to Bay 2024
On Sunday 15 September 2024, Team JRay completed the City to Bay 12km walk in Adelaide. Johnny, who has an STXBP1 disorder, rose to the occasion in true STX style and fearlessly took on the 12km, surrounded by his team of family and friends. Together they raised awareness of STXBP1, particularly in South Australia, and an incredible $9,000 towards finding a cure. A huge heartfelt thank you to everyone who shared, donated and sent messages of support, to Gateway Tax & Advisory and Pizza 4 Shore, to everyone who bought Meatsa Pizzas, and to Ben Watson for his supportive 12km walk in Ceduna.
Move to Cure
September is worldwide STXBP1 Awareness Month. The gene sits on the ninth chromosome, and September is the ninth month of the year. Originating in the USA, the “Move to Cure” walk has brought together supporters across multiple countries, all walking in locations around the world to raise funds for a cure for this rare gene mutation.
A Million Steps for STXBP1
In September 2021, Coco took her first independent steps, something her family had been told was likely never to happen. Inspired by her, the Shipley family set out to take a million steps to raise awareness and much-needed research funding for STXBP1.
Long Lunch Fundraiser
Friends, family and the wider community enjoyed a delicious three-course meal and learnt about STXBP1 to raise much-needed funds towards research for this rare condition. Exciting silent auctions were up for grabs, along with lucky door prizes and raffles.
Annual Fundraising Gala
An evening of silent auctions, lucky door prizes and raffles, all in the name of STXBP1 research. The event raised over $30,000, which allowed the foundation to fund our first research study here in Australia.
Be part of the next one
Our events are powered by a generous community. Can't make the next event? You can still help fund a cure for STXBP1.