JEN WONG

graduate / postgraduate scholarship, 2025

Supporting breakthrough research for children with dementia

When most people think of dementia, they picture elderly patients. But for families dealing with childhood dementia, the reality is heartbreakingly different – children as young as toddlers losing their ability to speak, move and connect with the world around them.

Mac.Rob alumnae Jen Wong is working to change that reality.

A PhD candidate at the University of Melbourne and researcher at Murdoch Children's Research Institute, Jen is pioneering the use of cutting-edge technology to give voice to children facing one of the most devastating childhood conditions.

Her groundbreaking research focuses on Sanfilippo syndrome, one of several childhood dementias that typically appears in early childhood and progressively robs children of their abilities. Through her PhD, Jen is characterising how speech and language deteriorate in these conditions, while also developing clinical trials to implement augmentative and alternative communication (AAC) therapy specifically for this vulnerable population.

“This trial aims to support families with children experiencing this devastating condition by providing their child access to communication so they can get their needs met," Jen explains.

“The trial is imperative but very complex.”

Jen, who was awarded Mac.Rob Foundation’s 2025 Graduate/Postgraduate Scholarship, says the opportunity will prove instrumental in advancing this critical research. Jen plans to attend a series of strategic conferences that will be pivotal to her work's success: the Lysosomal Disorders Summit, the International Society for Augmentative and Alternative Communication conference, and the Speech Pathology Australia conference.

Far from routine academic gatherings, these events serve as vital platforms where breakthrough research meets real-world application – connecting Jen with the families who desperately need her innovations and the global experts who can help refine and expand her work.

“Without the scholarship, my ability to travel to and attend these conferences would be very limited, making it difficult to share my work, connect with experts and recruit adequate participants,” she says.

For children facing childhood dementia and their families, Jen's work represents hope in the face of an unimaginable diagnosis. By giving these children new ways to communicate their needs, her research could fundamentally improve quality of life during their most precious time.

The Foundation's support ensures this vital research can reach its full potential, connecting Australian innovation with global expertise to help some of our most vulnerable young patients maintain their voice when they need it most.