Ren Pedersen’s daughter, Amy, was an energetic seven-year-old with a passion for ballet and sprinting, famously winning an interschool race shortly before receiving a devastating diagnosis of Diffuse Intrinsic Pontine Glioma (DIPG), a notoriously aggressive brain tumour affecting children. The early signs of her illness were subtle; she initially attributed her frequent tripping to ill-fitting thongs. However, as her condition progressed, she began experiencing unusual eye movements.
Following a referral from an eye specialist, the family discovered the gravity of Amy’s situation; the ophthalmologist had tragically lost her own children to brain cancer and urged immediate medical attention. Despite the lack of effective treatment options for DIPG, Amy showed resilience, surviving an additional 16 months before her passing at age nine in 2009.
In the aftermath of her death, Ren Pedersen found heartfelt notes written by Amy, encouraging him with messages like “Don’t give up, Dad.” These letters poignantly reflected her battle with the illness, tracking her loss of hand function and subsequent struggle to write again. Inspired by his daughter’s courage and the profound impact of her loss, Ren dedicated himself to advocating for research into DIPG, leveraging the connections he had forged with leading oncologists during Amy’s treatment.
His efforts contributed to the establishment of Australia’s first DIPG tumour bank in 2011, spearheaded by Associate Professor David Ziegler at the Children’s Cancer Institute. Over the past 15 years, significant advancements in DIPG research have emerged, including promising findings on a drug combination that yielded survival in two-thirds of tested mice, as well as insights into genetic predispositions associated with these tumours.
Despite these breakthroughs, there remains a critical gap between research progress and treatment availability. Ren emphasises the urgent need to bring these innovations to clinicians’ bedside, motivated by families he encounters who are enduring similar heartache.
In November, Ren initiated “Ren’s Million Dollar Mission,” aiming to raise $1 million for the Children’s Cancer Institute by rallying 1,000 supporters to each contribute $1,000. Despite facing challenges in a town recovering from severe floods, he was undeterred, already raising $110,000 locally and expanding his reach to larger cities in Australia.
His commitment to saving children’s lives drives him forward, as he continues to advocate for vital research and treatment access for families grappling with the harsh realities of DIPG.