Former Australian of the Year Alan Mackay-Sim, described as a "titan" of science for his work in stem cell research and brain diseases, has died.
He was 71.
Emeritus Professor Mackay-Sim, who was Australian of the Year in 2017, is probably best known as the scientist who led the world's first human trial using transplanted nasal cells into the spinal cords of three patients with paraplegia.
That five-year study, which began in 2002 with the first transplant in a man severely injured in a car accident, proved the procedure was safe – a mandatory first step before bigger trials. But their work stalled because of a lack of funding.
About a decade later, the Brisbane study provided a precedent for European researchers to transplant olfactory ensheathing cells, a type of nasal cell, into the injured spinal cord of Polish man Darek Fidyka, 40, allowing him to walk again using a frame.
Olfactory ensheathing cells make it possible for sensory nerves to regenerate. Research into nasal cells as a potential treatment for spinal cord injuries continues at Griffith University, where Professor Mackay-Sim performed much of his groundbreaking work.
Griffith researcher Professor James St John, who collaborated with Professor Mackay-Sim for many years and continues to research therapies for spinal cord injury, said he was blessed to be taught and work closely with "the very best in research excellence".
"Alan will be remembered as an exceptional mentor, irrespective of the experience level of those around him," Professor St John said.
"Alan was also passionate about engaging with people in the community and was an inspiring speaker and champion of research and supporting our next generation of scientists."
Trailblazer with the trademark moustache
Professor Mackay-Sim, known for his trademark moustache, is also hailed as a "trailblazer" in drug discovery work across a range of neurological diseases.
As late as last year, he was working on a project to find a potential drug treatment for a neurological condition, known as hereditary spastic paraplegia type 56 – also known as SPG56.
His team were analysing stem cells collected from inside the noses of two little girls with the condition – three-year-old Tallulah Whitrod, of the Sunshine Coast, and two-year-old Singaporean Alissa Lim.
Professor Mackay-Sim hoped they would be able to use the stem cells to screen drugs for their potential to halt or reverse the impact of genetic mutations on those cells.
In an interview with the ABC, Professor Mackay-Sim described his scientific work into rare diseases as like being a detective, searching for clues to help unlock the key to a mystery illness.
"We all read detective novels. At least, I do," he said. "It's the mystery of it happening that keeps you going. You're always searching around for clues as to what might be applicable to what you're doing."
Tallulah's parents, Golden and Chris Whitrod, moved from Darwin to the Sunshine Coast in 2021, to be closer to the Griffith research.
"Our hearts ache," Ms Whitrod said, describing Professor Mackay-Sim as a "great and wonderful moustached man".
"Alan gave us a lifeline, when we as parents, were in our darkest hours with a child with a rare and progressive disease, and nobody could give us hope," she said.
"He gave us hope in research and opened the door to a world where research translates into the clinic – to helping sick people get better.
"As Australian of the Year, he'd already been awarded for helping many people before us, and when he looked at our child's situation, and our bid to help her and treat this disease, he said: 'I think this is possible.'
"Alan didn't just give hope. He inspired.
"And he still does, for so many families, other research professionals and friends. He'll keep doing this, long after life's breath has closed out for him too soon."
Hang-gliding accident inspired interest in spinal cord injuries
Professor Mackay-Sim grew up in Roseville, on Sydney's North Shore, the third of four brothers. His father, Malcolm, was the owner of a hardware distribution company, and his mum, Lois, was a nurse.
He was diagnosed about eight years ago with multiple myeloma, undergoing a stem cell transplant, and retired in 2015, living on the Sunshine Coast, but continued his research at Griffith University, where he had worked since 1987.
While he was "not into celebrity", his research resulted in him meeting Superman — the late actor, Christopher Reeve, who became a quadriplegic after a horse-riding accident in 1995.
He also met the late Pope Benedict XVI in 2006 after the Catholic Church donated $50,000 towards his work to encourage alternatives to research on embryonic stem cells.
Professor Mackay-Sim spent months in a wheelchair himself after a hang-gliding accident in the US in 1979, the experience staying with him as he spent years studying spinal cord injuries, hereditary spastic paraplegia and other neurological conditions.
A close research collaborator Professor Vicky Avery praised his research as "highly innovative" and "creative", saying it contributed to drug discovery across "multiple neurological diseases".
Professor Mackay-Sim is survived by his wife of almost 40 years, Lisa, and two adult children Matilda and Callum.
