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 realized 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 arrived at their accommodation, they all sat outside and had a drink. He mentioned that his drink tasted strange, 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 a few months to live.

The deadly 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 40 than any other type of cancer.

Brain cancer patients face many challenges, including invasive surgery, premature mortality, physical and mental health problems, potential loss of career and income, ongoing healthcare and travel costs. and difficulty accessing drug trials.

In 2011, a rally was organized in the United States for people affected by brain cancer and their supporters to come to the Capitol in Washington to “advocate for increased federal funding for brain tumor research and urge policymakers to address critical issues affecting the brain tumor community.” “, which becomes 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 CEO of the National Brain Tumor Society of the United States.

At the first Head To The Hill event, hosted by NBTS, 30 advocates met with U.S. senators and representatives to persuade them of the importance of increasing government funding for therapies and advancing brain tumor research.

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

America’s 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 program as vice president in 2016, to “end cancer as we know it,” Mr. Biden ensured that America’s brain cancer community was included in advisory groups on areas the program should focus on.

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

A local version of the American rally was born in 2023, with the woman behind it knowing well the consequences of brain cancer.

“How could this happen to me?”

The first time Diane Dunn noticed something was wrong was when she had “struggle to remove the heavy baking sheets from the oven” at her Victoria-area bakery.

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

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

“I was 54,” she said.

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

Eventually, she had to give up her valuable business.

During her ordeal, Diane “heard about an event in Washington” and hatched a similar plan for Australian brain cancer patients and their families to take their cases to politicians where they were .

Take the matter to Canberra

Now in its second year, Australia’s Head to the Hill gathering in November will once again feature pairs of shoes and photos, as a stark visual reminder of those who fought and lost, which will be on display this year in the court.

“I’m thrilled with how the event went last year…it was a little chaotic and disorganized, but we learned a lot from it,” Diane said.

This year, Diane wishes “more politicians would attend, mingle in the crowd and read the biographies attached to the shoes.”

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

“There was a lot of feedback that people felt disconnected from others suffering similarly, whether they were patients, caregivers or even friends.”

Last hope

Before his death, Charlie Woolley received the standard treatment in Australia: surgery, radiotherapy and chemotherapy.

Australian doctors eventually 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 possible to try to 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 also there after being told “there was no There were no other treatments available in Australia or New Zealand. There were also patients from Dubai and Romania.

They spent two months there, with Leesa saying it “seemed like the treatment was working”, but Charlie’s condition quickly deteriorated – with the discovery of a second tumor. He was advised to return home while it was still safe to fly.

Charlie and his mother returned to Australia in April 2024.

“After being home for a week, Charlie had a massive seizure,” 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 is still here, every day,” Leesa said.

“Please don’t let any other family go through this”

Charlie will be represented at this year’s Head to the Hill gathering in Canberra, with Leesa sending a pair of his shoes to the event.

“Not being able to give these patients any hope of longevity or cure is cruel. We need more funding into scientific research to find a cure,” she said.

THE BTAA Head to the Hill 2024 Event will take place in the Courts of the Australian Parliament on Wednesday November 20 from 8 a.m. to 12 p.m.; registration is essential.

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