On the power of a simple idea and turning grief into action

I would say it goes back to my mother. She was a remarkable woman; an army nurse during World War II who later became the matron of the Cairns Base Maternity Hospital. From a very young age, I knew she was special. We couldn't walk down the street in Cairns without people coming up to thank her for her care and to show their babies and young children. She was a warm, kind and giving person who raised us to be free thinkers. We were taught to give anything a go and that there was no obstacle we couldn’t overcome. She instilled a real mindset of perseverance and action over ego.

I didn't set out to establish Brain Cancer Australia. My daughter Lucie was diagnosed with brain cancer, which is a brutal disease, and she showed extraordinary strength in the face of the cruel treatments that were dished out. After she died, I didn’t want her life or suffering to be for nothing. ‘Business as usual’ just wasn't an option, and that’s what initially got me going. And it’s the same thing that continues to drive me to give my time voluntarily to this cause. I want to stop the flatlining survival rates in brain cancer and  get the kind of progress in this cancer group that we've seen in other cancers.

Biobanking was the genesis. Biobanks collect and store tissue and blood samples from consenting donors for research. My involvement started when I was a consumer representative with the national brain cancer clinical trials group, where I got to know a lot of clinicians and researchers. One of the researchers mentioned that she was getting her tissue samples from Finland because she couldn’t access it here, but I knew that there were collections all around Australia and that disconnect planted the first seed.

Then I was at a conference, and I heard about a consumer in America who set up a network for a rare cancer and I thought, oh my God, I can do this.  Through my advocacy work, I organised the inaugural Brain Cancer Action Week and we brought out Professor Tim Cloughesy, a world expert in brain cancer, who told me that Australia had an opportunity to create the largest registry of brain cancer tissue and data in the world, which could do so much to advance brain cancer research.

Hearing this, was all I needed. I knew the people in charge of the different brain cancer tissue collections around Australia, so I brought them together to see if they were willing to collaborate and be part of a biobanking network - and people just agreed to do it. After that first meeting I thought my work was done, until I was told I would have to drive it. Research infrastructure, which is what biobanking and data is, was not well funded because people love the pointy end - the lab, the researcher, the drug and the potential cure. But this infrastructure work creates the pillars that underpin everything the brain cancer research community needs - data, tissue, collaboration, and for everything to be standardised so they can compare the tissues across labs.

My initial goal was to simply get this group to open their fridges and share the tissue, but soon that collaboration started to grow. We continued developing ideas and over the past 10 years of Brain Cancer Australia that collaboration has really helped us drive change. We are giving the entire brain cancer research community what they need to progress this cancer research in Australia. It’s that philosophy that a rising tide lifts all boats.

If you have a simple idea and follow it through, it can be transformational. Even if you're not an expert and the odds feel impossible, persistence makes things possible.

I’ve also learned that there’s power in being a consumer with no agenda. I put patients front and centre, and when people see that, they get behind the mission. When I got involved, there were very few advocates in brain cancer. It's a rare cancer, it takes people out quickly and it leaves the survivors absolutely flattened. I was in an unusual situation where Lucie had a seven-year trajectory, even though there was nothing that was going to stop her dying from this disease. So, I got involved, gave up my career and never looked back because the work became too important.

My other lesson is something I learned when I worked in television - that you need to stay focused on the story (don’t get distracted), do your research and develop a good structure. Even though research infrastructure was hard and unsexy, I made it my focus. I never believed that I could achieve this level of collaboration and the willingness of people to come on board with me has been really powerful. 

It was a revelation to get that initial dozen people together to open their fridges - now we have a national consortium of over 90 clinicians and researchers from institutes around Australia. And we are building three national research infrastructure platforms to collect the data to enable best practice patient care, undertake cost effective clinical trials, allow patients to engage in research, and  standardise biobanking in brain cancer. I'm always the reminder of why we do what we do - I'm the mother who lost her daughter. The simple idea of getting all the biobanks together to share tissue has been transformational.

I have to go back to my roots to answer this. Giving was in my mother’s bones, and that's what I want to see – for giving to be in people's bones here in Australia. I saw it when we went to America for a clinical trial for Lucie and it gave me a real insight into philanthropy - it was quite a revelation because in America giving is expected, and people just do it; it’s in their bones. 

My ambition for Brain Cancer Australia, is to keep building the research infrastructure - we have the plan, we have the partnerships, and the people. We need to keep building and collaborating to make the breakthroughs. If we want to make progress, we have to join forces.