Emma Gilmour's dad got another decade with his family, thanks to a Canberra-based immune disease treatment, before he died three weeks ago.
The medicine centre that revolutionised Arthur Hodge's life, which had been weighed down with the painful symptoms of a rare gene mutation, officially opened today.
Ms Gilmour said the work of Australian National University Associate Professor Simon Jiang and his research team had given her dad his life back.
"[Dad] went from being in a wheelchair, and having seven months straight in hospital about 10 years ago to pretty much running, getting into trouble from Simon for climbing up ladders," Ms Gilmour said.
"Whereas before, 25 years ago I think was the first time that we looked to say goodbye to dad.
"What Simon did for dad in the 10 years since Simon found dad ... he gave us 10 extra years."
Australia's first personalised medicine clinic for immune diseases has officially opened at the Canberra Hospital, allowing Dr Jiang and his team to continue their work.
The Centre for Personalised Medicine is a partnership between the ANU and Canberra Health Services, using technology to shape treatment plans that reflect the genetic, immunological and environmental drivers behind complex immune conditions.
Ms Gilmour said she and her 18-year-old son had tested positive to the same ITK gene that caused immune diseases in her father.
Ms Gilmour suffers from arthritis and experienced a transient ischemic attack or "mini-stroke" at the end of 2025.
"But I'm 25 years better off because dad found Simon," she said.
"[Dad] was just a very sick man from a very young age, so he had multiple people throwing things at him, so he was on lots of medication, he'd been under palliative care for 20 years."
Another centre patient Marilyn Hines, who lives with the rare antisynthetase syndrome, said personal treatment allowed her to receive medicine that treated her condition, not just the symptoms.
"Because it's so rare that it affects different organs, I think people have trouble ... they can treat the symptoms, but Simon gets to the actual crux of what the condition is and why you've got it, and looking at the medications that can actually target the causes of what's going on," she said.
"A lot of these strong medications that you take have a lot of side effects, which is not pleasant, so reducing the number of medications is just amazing, it's life-changing."
Centre director and associate professor Simon Jiang said the launch of the centre reflected a shift towards a new model of care that sought to understand the root causes of disease in each patient, and use that knowledge to guide the most effective treatment options.
"For many patients, this means moving away from trial and error towards care that is more targeted, more precise and ultimately more effective. Our vision is to connect patients, clinicians and researchers across Australia so more people can benefit from this approach, no matter where they live, and to help ensure research is translated into real improvements in patient outcomes," he said.
Built on more than 20 years of research, the centre supports patients with conditions such as inflammatory bowel disease, rheumatological disorders and kidney disease that are challenging to diagnose and treat.
ACT Health Minister Rachel Stephen-Smith said the centre combined the clinical excellence of Canberra Health Services with world-leading research at the Australian National University to deliver targeted treatment plans.
"I'm always proud to be a Canberran, but too often we hide our light under a bushel when it comes to the absolute world leading research and clinical innovation that occurs in this city," she said.
"[The centre] will be accepting referrals from right around the country to do something that no other centre has yet been set up to do."
In addition to treating patients from the ACT and surrounding areas, the centre also works with Aboriginal and Torres Strait Islander communities across Australia to identify new treatments to combat kidney disease.
