Community & Business
28 July, 2026
Inroads into Moyamoya research
YEARS of fundraising efforts from Ravenshoe local Nicola Baker has allowed a world-first research project to be undertaken at Macquarie University which could transform the understanding of one the rarest and most devastating brain diseases.
Headed by internationally renowned neurosurgeon Professor Marcus Stoodley, the Australian-led study is the first dedicated genetic investigation of Moyamoya Disease in patients from Australia and New Zealand.
It was made possible thanks to funding from charity organisation Moyamoya Australia, which Ms Baker founded in 2019, and aims to uncover the genetic clues that have remained elusive for decades, with the ultimate goal of improving diagnosis, treatment, and outcomes for future generations.
“The catalyst for the research has been the many generous donors supporting (us). Through their generosity, over $100,000 has already been raised to launch the first stage of the study,” Ms Baker said.
While genetic research has historically focused on Japanese and East Asian populations, where the disease is more prevalent, clinicians have long recognised that it often presents differently in Western patients.
Professor Stoodley said the research represented an important opportunity to answer one of the biggest unanswered questions surrounding Moyamoya.
“If we can identify the genetic factors responsible, we have the potential to improve diagnosis, identify people at risk earlier, better understand the disease process, and ultimately improve outcomes for patients around the world,” he said.
Ms Baker, whose son was diagnosed with the disease at a young age, said the research represented a defining moment, not only for herself but for families who had spent years searching for answers.
“When Jed became ill, we discovered just how little was known about Moyamoya Disease and how difficult it could be for families to find answers. That’s why this research is so important, families living with Moyamoya have been asking ‘why?’ for decades,” she said.
“So, this isn’t just about our family anymore – it’s about every family living with the disease and every family that will face it in the future. This study gives us genuine hope that we are finally getting closer to those answers.”
