Leaders in business, philanthropy and social impact will unite to raise money for rare and undiagnosed diseases (RUDs) at the exclusive Gold Series – Perth fundraising gala on August 29.
A collaboration between Perth Children’s Hospital Foundation (PCHF) and Sydney Children’s Hospitals Foundation (SCHF), Gold Series – Perth is swiftly becoming a fundraising juggernaut after its debut in 2023 to help drive innovation in children’s health care.
In 2024, the event raised more than $1.3 million and this year, the prestigious fundraiser will shine a light on one of the most challenging and overlooked areas of paediatric health: RUDs.
For families of children with RUDs, the toll can be immense as they deal with the uncertainty and complexity of a rare illness or not having a diagnosis at all.
Six in 10 childhood deaths are due to rare diseases, and on average, families wait more than five years for a diagnosis.
In many cases, the journey to a diagnosis, care and support can take years of unanswered questions, hospital stays, isolation and uncertainty while children and parents wait for clarity on a path forward.
Care is often complex and involves many different doctors, specialists and services, which can leave families feeling stressed and overwhelmed.
The 2025 Gold Series – Perth fundraising gala will take place on August 29. Photo: Shot By Thom
Unlike common diseases and cancer, only 5 per cent of rare diseases have a drug treatment, so for so many children, access to clinical trials is their only hope of life-transforming or life-saving medicine.
A better life for these children and their families is a shared vision of PCHF and SCHF, with Gold Series – Perth aiming to raise vital funds to support research, early detection and lifesaving interventions.
Toby Jamieson is eight years old and one of more than 63,000 Western Australian children living with a rare disease and one of 500,000 across the nation.
He is living with Cockayne syndrome, which is a degenerative DNA repair disorder that causes rapid ageing and has a median life expectancy of just 12 years old.
Toby is currently the only child in WA with Cockayne syndrome and one of just seven children across Australia.
Everything seemed normal before and during Toby’s birth but in his first year his mother Nicole Jamieson noticed something wasn’t quite right with his health.
After experiencing an extreme reaction to sunlight and failing to hit development milestones, Toby underwent a series of tests, but everything came back clear.
It took four years for the family to finally get an answer after Toby was eventually referred for genetic testing. He has learned to live with poor eyesight, short stature, extreme sensitivity to light, stiff joints and tremors.
Ms Jamieson said that the rare condition has affected all aspects of Toby’s health and development, with symptoms only expected to worsen over the course of his life.
“When I go to medical appointments, I bring a big file with all the relevant literature to give to doctors because no one’s heard of Cockayne syndrome, which can be really scary when health decisions are being made for your child,” Ms Jamieson said.
Toby is the only child living with Cockayne syndrome in Western Australia.
Fortunately, Australia is leading the way in a new era of rare disease innovation and care with Perth Children’s Hospital’s world-leading Rare Care Centre delivering life-changing care and support for children and families navigating the complex needs of rare diseases.
“I’m very thankful for the Rare Care Centre,” Ms Jamieson said.
“For patients and their families who visit the Centre, while our syndromes and challenges might be different, we all fit under that umbrella of rare disease, that’s what brings us together.
“I'm really looking forward to seeing how the Rare Care Centre’s services can be expanded to support families as it continues to grow and develop.”
PCHF chief executive Carrick Robinson said the Gold Series – Perth event will help amplify momentum in RUD innovation, accelerating new technologies such as AI, advanced imaging and genomics to transform diagnosis, care and support.
“This will be a truly special fundraising evening bringing together some of Perth’s most influential and generous leaders to make a lasting impact on children’s health,” Mr Robinson said.
“Gold Series – Perth will support translational research turning discoveries into treatments, delivery of predictive and preventative care and expanded access to clinical trials and new therapies for diseases previously considered untreatable.
“For children and families, this means better care and support so that they can live their best lives possible.”
Rare Care Centre medical director Gareth Baynam (left) stands with Gold Series – Perth Committee members Mei Yong, Bryce Sceresini, Sarita Escalante and Ania Fry.
SCHF chief executive Kristina Keneally said the upcoming Gold Series – Perth was a “shining example” of how generosity and collaboration can transform children’s lives.
“This event unites passionate communities from coast to coast, enabling us to deliver faster diagnoses, more personalised care and vital support to families who face uncertainty every day,” Ms Keneally said.
“Together, we are creating a stronger, more connected future for children’s health.
“I want to sincerely thank our partners in Western Australia and the Gold Series – Perth Committee for their vision and leadership.”
The committee is driven by members and philanthropists Sarita Escalante, Ania Fry, Benita Kam, Mei Yong, and committee chair Bryce Sceresini.
“Their dedication has sparked a wave of generosity that will drive real change, funding breakthroughs that bring comfort and hope to children and families nationwide,” Ms Keneally said.
By Hearts and Minds
