Honoring Charlie: A Heartfelt Tribute to Brain Cancer Fighters at the Canberra Rally

Around 1,500 souls unexpectedly succumb to brain cancer each year in Australia—a staggering statistic that surpasses the country's annual road toll. Among those this tragic year was Charlie Woolley, a young Tasmanian man whose mother fondly remembers him as a "beautiful, positive, and honest soul." It's a heartbreaking irony, isn’t it? Life brimming with possibilities cut short by something so insidious.

As the nation grapples with this grim reality, advocates are set to gather in Canberra to campaign for better outcomes for those fighting this fierce battle. This rally draws inspiration from a similar event in the US, and as fate would have it, the very woman behind the Australian initiative is embroiled in her own struggle against this beast of a disease.

Leesa Gasparin, Charlie’s mother, paints a vivid picture of her son: “very intuitive, creative, loving, kind, caring, and honest”—a description that radiates warmth, making the loss even more profound. The journey began in 2022 when something felt off, a mother’s instinct perhaps. Charlie and his friends were celebrating New Year's Eve in Portland, Victoria. During this jovial time, he remarked how his drink tasted a bit peculiar. He stepped inside for a refill, and upon returning, he heard voices coming from the kitchen. But no one was there. What followed was devastating: three epileptic seizures that would change everything.

The culprit? A glioblastoma, the most aggressive form of brain tumor, whispering to Charlie that his time was tragically limited. According to the Cure Brain Cancer Foundation, this disease is a grim reality for many, with it claiming more children in Australia than any other illness. Imagine: a world where career dreams, youthful hopes, and vibrant lives are abruptly extinguished by this invisible enemy. The treatment itself is a labyrinthine challenge, with the blood-brain barrier notably obstructing effective medication. It’s a mind-boggling puzzle that keeps many in the dark.

Across the globe, back in 2011, a rally was born in the US—a gathering of hope, heartbreak, and advocacy on Capitol Hill. People grieving their loved ones came together, channeling their sorrow into action. David Arons, president of the US National Brain Tumor Society, eloquently noted, “They are taking deep, deep pain and finding a purpose.” How beautifully tragic is that?

This poignant gathering led to increased funding for brain cancer research nearly doubling since its inception—from a mere $ million to a whopping $518 million in 2025. Plus, having a figure like President Joe Biden, who lost his own son to this disease, has undoubtedly amplified their voices.

In Australia, Diane Dunn recognized a similar need when she found herself grappling with her own diagnosis of a grade 2 oligodendroglioma tumor in 2016. “Why me?” she pondered, struggling to reconcile her active lifestyle with such a cruel twist of fate. Instinctively, she knew that to make noise meant to be heard. Thus, in 2023, the Australian Head to the Hill rally burst onto the scene.

This year, Diane hopes for more politicians to connect with attendees, to engage earnestly with their narratives. “I want them to have real conversations about the issues facing brain tumor patients,” she expressed, laden with the hope to spark meaningful progress in treatments and funding.

As for Charlie Woolley, before his untimely passing, he underwent a standard regimen of surgery, radiation, and chemotherapy. After exhausting all options in Australia, a glimmer of hope led him and his mother to Thailand. Amidst a wellness center populated by others facing similar battles, they found solidarity and perhaps an ounce of healing.

Two months later, however, the harsh reality hit: Charlie’s health had deteriorated, and with the discovery of a second tumor, the duo returned home. Just a week back in Australia, a massive seizure would set the stage for Charlie's final act. With each twist in this tragic tale, it leaves us contemplating the fragility of life.

Charlie passed away in July 2024, leaving behind a mother who ache with both the grief of loss and the beauty of memories. “No mother should ever bury their child,” Leesa reflected, a sentiment that cuts deeper than any words can convey. At this year’s rally, a pair of Charlie’s shoes will stand as a silent testament, urging our leaders to prioritize funding for research and solutions that may prevent another person from experiencing the pain their family endured.

The 2024 BTAA Head to the Hill event promises to be a poignant reminder of not just the lives lost, but the lives still fighting. Let us hope, and advocate fiercely, so that no other family has to navigate through the horrors of brain cancer—it’s the least we can do for those we’ve loved and lost.