The right thing to do

Alongside her battle to defy the odds, Sarah has built a teaching career and become a powerful advocate for people with rare cancers and disease. She supports patients through their diagnosis while campaigning for greater research, improved access to treatments and better outcomes.

“Fighting for equity, whether it’s across education or healthcare, means a tremendous amount to me and is what drives me,” she says.

In recognition of her advocacy and service, Sarah received the Medal of the Order of Australia (OAM) in 2023 and was a finalist for ACT Australian of the Year in 2026. She has also been awarded the 2026 ACU Alumni Mission Award. 

Supporting other patients

Gastrointestinal stromal tumours are rare cancers of the digestive system, affecting around 10–15 people in every million worldwide. In Australia, someone is diagnosed with a rare cancer every 12 minutes.

Any cancer diagnosis is devastating, but people with rare cancers also face delayed or protracted diagnoses, limited and often prohibitively expensive treatment options, uncertain prognoses, and little access to specialist information and support.

Sarah helps patients navigate that uncertainty by offering information, connection and hope.

“I am contacted by about one patient a week who’s desperate for access to a treatment or support,” she says.

“Their doctors have said that there are no other options, but for people with rare cancers other treatments do exist and are being used effectively, it’s just the treating doctor may not be aware of them, or they may not be funded for that particular cancer type. For example, for my cancer there are three funded treatments for a disease that has 12 possible treatments.

“So my role, which is very much at home, often in my PJs if I’m not well, is talking patients through their diagnosis, helping them understand their disease, linking them up with support and discussing available treatment options. 

“It not only gives people the strength and courage to self-advocate, but it also helps their doctors and nurses better understand this rare disease. This then gives better outcomes for all patients, and hopefully for our kids’ generation too.”

In 2025, Sarah also became President of Patient Voice Initiative (PVI), a patient-led organisation that works to ensure all patients are seen, heard and valued in the healthcare system.

Finding community

Facebook is known for many things – these days, those are often negative – but in its infancy it threw Sarah, and many patients like her, a lifeline.

“My early days with the disease were pre-Internet, so my doctor wrote down the name of the disease on a Post-it note,” Sarah says.

“There were no clinical trials, no pamphlets, nothing. I was then sent home from hospital and told, ‘Come back if your symptoms change.’ It was isolating and terrifying. I had this overwhelming sense of living with a time bomb.”

Despite the uncertainty, Sarah built a career in education, married her husband, Tom, and welcomed their son, George, after a carefully managed pregnancy.

Around 2010, after exhausting her own treatment options, Sarah started speaking publicly about her experience and a community started to form.

“People started finding me through Facebook and sending me messages asking for help and how I coped,” she says.

“I had never met anyone else with my disease. Suddenly there were people who understood what we were going through. We were able to support each other emotionally, but even more so, help each other understand this disease.

“And then, because I was one of the longest living patients, people turned to me for support. It made me realise that we needed more support, better funding, better access to treatment. All of us were falling through the cracks.”

Sharing the courage

Sarah’s move into advocacy started with making medical folders with a school colleague.

“I’d made my own medical folder with notes, suggested questions for oncologists and all my pathology documents, and I thought that was something tangible I could make for people,” she says.

Sarah posted more than 50 folders to patients she’d met, to help them manage their appointments and feel more empowered in the medical system.

About five years later, she heard about Regorafenib, a treatment that promised to control her cancer and extend her life. It wasn’t on the Pharmaceutical Benefits Scheme (PBS) and would cost $120,000 a year.

“I rang up Rare Cancers Australia (RCA) in a panic, and our family ended up on the front of The Sydney Morning Herald,” says Sarah. “I crowdfunded and we were eventually able to access compassionate access from the drug company. I was incredibly fortunate.”

The experience exposed the impossible choices many rare cancer patients faced.

“The conversations I was having with other patients were, do you take $120,000 off your mortgage to fund a treatment, or do you just accept that this is the end?

“Although my treatment was working, I knew that all my future treatments would need to be self-funded or crowdfunded or negotiated through compassionate access. That was when I realised we had to raise awareness, improve public policy – a big bold ambition in health – and try to get some more treatments listed for our disease.”

In 2021, Sarah organised and led a grassroots campaign for the government to list Qinlock – an advanced third-line oral therapy used to treat GIST – on the PBS. Without subsidisation, the drug would cost around $15,000 each month indefinitely. 

After a nine-month campaign that united patients across Australia and gained bipartisan support, Qinlock was finally approved and listed on the PBS.

Sarah’s disease has progressed and she started on Qinlock in mid-2026. With a script, she now pays just $25 per month rather than the $16,000 listed on the box.

A family affair

When Sarah’s husband Tom was diagnosed with Fabry disease in 2011, a time when her own health declined, it felt as though they’d won the unluckiest lottery.

Fabry disease is a rare inherited condition where a certain type of fat builds up in your cells, causing organ damage if left untreated. Tom and nine members of his family tested positive for it after an uncle received a posthumous diagnosis.

Tom was fitted with a pacemaker and started enzyme replacement therapy to manage his condition.

“I have vivid memories of George being in kindergarten,” recalls Sarah.

“Tom was working full time, I was working two days a week, as much as I could. George would come home, Tom would be hooked up to the IV with a nurse there, and I’d be a full-time carer. And if I was in hospital, we’d just have to lean on our family and friends to keep us functioning.”

To manage Tom’s care, Sarah made him a medical folder. And then adapted to a new normal of regular checkups.

“We both have regular checkups with all our specialists – I already had four or five specialists, and Tom topped me with six – and hope our diseases are stable, and we try to advocate for improved access to treatments for Tom’s disease as well as mine.”

Sarah’s advocacy has expanded to improve affordable access to new Fabry treatments in Australia and New Zealand, where Tom’s family are from.

“Tom has been the most incredible support,” says Sarah. “We’re a hell of a team.”

‘The right thing to do’

Sarah has achieved much in her life, and she is most proud of what she’s accomplished for others.

“It’s a long road, and advocacy can be very emotionally challenging, particularly when you lose people. But I’m really proud to play a role in helping others feel more confident, more at peace, and as though they have more options to live a longer, healthier and more meaningful life.

“I am just one small part in a very big system for one rare disease, and I don’t see my achievements as grand. But if I can make life easier for even a few people, then that feels good, it feels important. It feels like the right thing to do.”

Sarah is the recipient of the ACU Alumni Mission Award in 2026 ACU Alumni Awards.