Leesa Gasparin remembers her son Charlie Woolley as “a very intuitive, creative, loving, kind, caring, beautiful, positive and honest soul.”

WARNING: This story contains images that may cause distress

The family first learned something was wrong in 2022.

“Charlie and his friends were driving to Portland, Victoria to celebrate New Year’s Eve in 2022,” Leesa said.

“Charlie said that when they got to their accommodation they all sat outside and had a drink. He mentioned that his drink tasted weird, so he went inside… to make another drink.

It would turn out that Charlie had a brain tumor: a glioblastoma, or GBM, the most aggressive type.

Seemingly out of nowhere, Charlie probably only had months to live.

Fatal success rate of brain cancer

According to the Cure Brain Cancer Foundation, brain cancer kills more children in Australia than any other disease and more people under the age of 40 than any other type of cancer.

There are many challenges that brain cancer patients face, including invasive surgery, face premature mortality, physical and mental health problems, potential loss of career and income, ongoing health and travel costs, and access difficulties in drug studies.

In 2011, a US rally was organized for people affected by brain cancer and their supporters to travel to Capitol Hill in Washington to “advocate for increased federal funding for brain tumor research and to urge policymakers to address critical issues affecting the brain tumor community. “, turning into an annual event.

“You meet people who have lost a loved one, a spouse, a child, a parent, a sibling, a friend, sometimes very recently,” said David Arons, president and chief executive officer of the US National Brain Tumor Society.

At NBTS’ first Head To The Hill event, 30 advocates met with US senators and representatives to convince them of the importance of increasing government funding for therapies and advancing brain tumor research.

Since then, funding for brain cancer research has nearly doubled from $280 million in 2011 to $518 million in 2025 ($426 million to $788 million).

The American brain cancer community has an ally in President Joe Biden, who lost his son Beau to the disease in 2015.

When he launched the National Cancer Moonshot as vice president in 2016 to “end cancer as we know it,” Mr. Biden made sure the American brain cancer community was included in advisory groups on what to focus on the program.

The US Head To The Hill’s success in raising awareness of the disease – and attracting funding – has not gone unnoticed in Australia.

A local version of the US rally was born in 2023, with the woman behind it knowing full well the toll that brain cancer can take.

– How could this happen to me?

The first time Diane Dunn noticed something was wrong was when she found it “difficult to get heavy trays out of the oven” at her bakery in regional Victoria.

“My left arm didn’t seem to be doing as well as my right arm. It felt weird.”

Diane was diagnosed with a grade 2 oligodendroglioma tumor in 2016.

“I was 54,” she said.

“I thought I was leading a very healthy lifestyle. How could this happen to me? Why doesn’t this happen to someone who smokes or drinks or is out of shape?” she said.

Eventually, she had to walk away from her cherished business.

During her ordeal, Diane “heard of an event in Washington” and came up with a similar plan for Australian brain cancer patients and their families to take their case to politicians where they are.

Taking the case to Canberra

Now in its second year, November’s Australian Head to the Hill rally will once again feature pairs of shoes and photos as a stark visual reminder of those who have fought and lost, to be displayed in the yard this year.

“I’m delighted with how the event went last year… it was a bit chaotic and disorganized but I learned so much from it,” said Diane.

This year, Diane wants “more politicians to attend and mingle with the crowd and read the bio on the shoes.”

Diane is most proud that the rally provided an “opportunity” for “people to come together.”

“There was a lot of feedback that people felt disconnected from other people suffering in a similar way, whether they were patients or carers or even friends.”

The last hope

Before Charlie Woolley died, he received the standard of care in Australia: surgery, radiation and chemotherapy.

Eventually, doctors in Australia told him there was “no other treatment available”.

Then Charlie and Leesa decided to go to Thailand. She was determined to help him in any way she could to try and beat the odds.

It was their last hope.

At a cancer “wellness” center in Bangkok, they found others from Australia and New Zealand, who Leesa said were there after being told there was “no more treatment available in Australia or New Zealand”. There were also patients from Dubai and Romania.

They spent two months there, with Leesa saying the treatment “seemed to have worked”, but Charlie’s condition soon deteriorated – with a second tumor found. He was advised to return home as soon as he could fly safely.

Charlie and his mother returned to Australia in April 2024.

“After being home for a week, Charlie had a massive meltdown,” Leesa said.

Charlie died in July 2024.

“My memories of Charlie are both heartbreaking and beautiful. I can feel him with me every second of the day. He shows me signs that he’s still around, every day,” said Leesa.

“Please don’t let another family go through this”

Charlie will be represented at this year’s Head to the Hill rally in Canberra and Leesa will be sending a pair of shoes to the event.

“It’s cruel that we can’t give these patients any hope for longevity or a cure. We need more funding invested in scientific research to find a cure,” she said.

The The 2024 BTAA Head to the Hill event will be held in the grounds of the Parliament of Australia on Wednesday 20 November from 8:00am to 12:00pm; registration is essential.

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