OUR STORY
It began with one little girl
Neuroblastoma Australia is a registered childhood cancer charity focused on raising funds to improve survival rates for neuroblastoma. It all started with the inspiration of one little girl - Sienna.
♥ In memory of Sienna
A diagnosis no parent imagines
In 2008, Lucy and her partner Oliver moved from London to Sydney with their nine-month-old daughter, Sienna, to start a new life in Australia – full of excitement for what lay ahead.
Six weeks after arriving, Sienna developed recurrent temperatures. What followed was a journey no family could have imagined — and a diagnosis that would change everything: neuroblastoma, one of the most aggressive and under-researched childhood cancers that exists.
Our inspiration
Sieanna's Story
When the temperatures kept coming back, I decided to take Sienna to Sydney Children’s Hospital. It was there that we started on a journey we had never imagined, when we were told that Sienna had a large tumour in her abdomen – and that she had neuroblastoma. We had never heard of this disease, but we were soon to learn how aggressive, and how under-researched, it is.
Nine months of extensive treatment followed Sienna’s diagnosis. Each stage seemed harder than the last, and it felt never-ending — but finally, we were told the news we had prayed for: Sienna was in remission. We hoped our journey with neuroblastoma was over.
Sadly, eleven months later, during a routine scan, a new tumour was discovered. We were told the heartbreaking news that Sienna had relapsed – and that there is no cure for relapsed neuroblastoma.
We clung to the hope of a miracle, embarking on new treatments and enrolling in a clinical trial. But the disease became even more aggressive, even before the trial began, and we tragically lost our little girl when she was just two and a half years old.
Watching Sienna’s final days without being able to help her is the hardest thing any parent could endure – and my frustration that no better treatments existed remains, to this day, huge.
The survival rate of neuroblastoma, like many other rare childhood cancers, can be changed with research. And research is all about funding. Since Sienna’s diagnosis, I have been a passionate advocate for raising the profile of this disease and raising funds, so that better treatments can be developed.
In 2010, I met another mother, Michaela Flanagan, whose daughter Ciara was diagnosed with neuroblastoma and is a survivor. Together, we began developing fundraising events. The first Sienna Gala Dinner was held that same year, Michaela organised the first Balmain fun day in 2011, and in 2013 we held the very first Run2Cure. In 2012, Neuroblastoma Australia became a registered charity, receiving DGR status in 2014.
It is my belief we can save children in the future, through investing in research today.
— Lucy Jones, Founder & CEO
From loss to legacy
How it all began
A new life in Sydney
Lucy, Oliver and baby Sienna move from London to Australia. Weeks later, Sienna is diagnosed with neuroblastoma.
A shared purpose
Lucy meets Michaela Flanagan. The first Sienna Gala Dinner is held to raise funds for research.
The community rallies
The first Balmain fun day brings the local community together for the cause.
Neuroblastoma Australia is born
The charity becomes officially registered — dedicated solely to funding neuroblastoma research.
The first Run2Cure
The inaugural Run2Cure Neuroblastoma fun run takes place — now an annual flagship event.
DGR status granted
Deductible Gift Recipient status means donations over $2 become tax-deductible.
Over $4 million raised for research
Thanks to supporters, the charity continues to fund vital work towards better, safer treatments.
Every child deserves the chance to grow up
We can save children in the future by investing in research today. We would welcome your support to help make sure every child gets the chance they so deserve.
