Michael Julian’s young life and early adulthood were characterized by bouts of piercing pain and hospitalizations, the result of a debilitating inherited inflammatory immune disease that also afflicted his father and his aunt.
While his condition had a name: tumor necrosis factor receptor-associated periodic syndrome, or TRAPS for short—it wasn’t until he was 35 and walked through the door of Dr. Charlotte Slade, a clinical immunologist based at the Royal Melbourne Hospital, that there was a possibility of relief.
Michael Julian and his daughter, Pearl, both carry a gene mutation called TRAPS. Eamon Gallagher
He was matched to a precision drug called Anakinra that has, literally, turned his life around.
“It was the biggest, most life-changing moment. It was something I’d always dreamed about – that maybe there was an answer out there,” said Mr Julian, a musician and educator with the University of Melbourne.
In recent days, the Snow Medical Research Foundation donated $100 million over 10 years to advance Australia’s already global position as a leader in immunology research.
The money will go to the Walter and Eliza Hall Institute of Medical Research and Royal Melbourne Hospital, providing them with funding certainty over the next decade.
“We were looking for a transformational project and a 10-15-year vision,” said Tom Snow, chair of the Snow Medical Research Foundation.
“WEHI came up with an amazing project that they’ve already been working on for 10 to 15 years, and we can supercharge some of the world’s best researchers in the field.”
While the funding is for 10 years, Mr. Snow said he expected the partnership would be for at least 15 years using a staged approach. The first five years will be to measure and model the immune system; the next five will establish diagnostic measures and the last five will work on drug targets and how to treat conditions.
The foundation has already given away about $100 million. It gives early-career researchers $1 million a year for eight years to set up a laboratory, employ staff, and buy equipment, releasing them from the anxiety and endless search for additional funding to secure their careers.
Alan Cowman, acting director of WEHI, said Snow Foundation’s approach to philanthropy – long-term and big financial investments – came about because they understand that “research takes a really long time”.
“They are willing to invest in the long term and make sure something comes out of it.”
For leading medical research institutes such as WEHI, which have no block funding from governments and survive by winning competitive research grants and philanthropic donations; this amount of money gives long-term certainty, he said.
In exchange, the foundation shares in any financial gains that come from the development of drugs and therapeutics as part of the research.
“Nothing goes back to the Snow family. It all goes back to the charity,” Mr. Snow said.
The Snow family, which is headed by patriarch Terry, who made his fortune from the Canberra Airport precinct, has two philanthropic arms: the Snow Foundation, which is run by his daughter, Georgina Byron, and the Snow Medical Research Foundation.
The family was listed as the 10th most generous philanthropists in the 2023 AFR list, having donated an estimated $22 million last year.
For Mr. Julian, the timing couldn’t be better. A new father to daughter Pearl, who also carries the TRAPS gene mutation, he is confident her life will be less complicated and less painful than the condition he endured for three decades and which took his father’s life prematurely.
“She may be symptomless. Some people with this mutation live completely normal lives. But it’s so reassuring to know she won’t have to navigate all the complications that my dad, my aunt, and I did.
“We know there is something that works, and it is embedded in rigorous research.”