Ellen Webb Addresses Focus Group

The Macedon Ranges Focus Group has Supported CIKA’s fund raising efforts for well over twenty years during which time members have provided more than $200,000 to our combined fight against childhood cancer. CIKA is always pleased to be represented at the Group’s Birthday Celebrations and this year was no exception. Our vice president, Ellen Webb was invited to address the Group on CIKA’s goals and activities. She is seen above with Focus Group President, Annette Swaffield.

Here is the text of Ellen’s address.

Good afternoon, everyone, thank you for giving me the opportunity to speak with you today.

Firstly, I would like to thank your President, Annette Swaffield, and the committee for the continued support of CIKA. Over the 29 years that FOCUS has supported CIKA, you have contributed more than $200,000 towards childhood cancer research. Thank you for your generosity, commitment, and ongoing support.

I’d like to tell you a little about CIKA and the research we are funding. I’m speaking to you this afternoon not only as Vice President of CIKA, but also as the mother of my son, Brian, who died from neuroblastoma. Losing Brian changed our lives forever, but it also gave me the determination to try to make a difference in his memory.

The members of CIKA are families and friends of children who have had a solid tumour. We are connected through experiences none of us would ever have chosen, but also through a shared determination to improve outcomes for children and families in the future. While some of our children have made a full recovery, sadly many have not fared so well. The aggressive and toxic treatments used to save their lives can cause ongoing side effects including hearing loss, heart problems, amputations, infertility, secondary cancers, and many other lifelong challenges. The advances made in childhood cancer treatment mean that most children diagnosed with cancer today will survive. But CIKA’s goal is not only to help children survive cancer, but to help them thrive after treatment with fewer long-term effects.

Since its inception, CIKA has raised more than five million dollars. These funds have come from generous supporters like yourselves, along with the fundraising activities we continue to run. Some upcoming events include the Heywood Tractor Trek this weekend, the Fun Run at Gardiners Creek Reserve on the 31st of May — and don’t be put off by the name, last year we had just as many walkers as runners — along with our monthly stalls and the Old Time Wood Days on the 7th and 8th of November.

The funds raised by CIKA support research at the Royal Children’s Hospital and in conjunction with the Murdoch Children’s Research Institute. Over the years, CIKA has funded equipment, clinical support roles, and early-stage research projects. I am particularly proud when I look back at some of the early research CIKA supported in the early 2000s — especially immunotherapy — and see how that work has now become part of mainstream treatment.

CIKA is currently funding two positions at the RCH, with a total commitment of almost $870,000. The first is the CIKA Clinician Scientist Fellow, funded over five years through to 2030. The Fellow is dedicated to finding better treatments for children with solid tumours through improving recovery after transplants, understanding aggressive tumours, and developing stronger cell therapies. This work is laying the foundation for future clinical trials, improved survival after transplants, and more personalised treatments for children.

The second is a Research Assistant in the Eisenstat Lab, now in its third year. The Research Assistant supports translational research projects related to neuroblastoma, retinoblastoma, and paediatric high-grade gliomas, helping turn laboratory discoveries into real treatments for children.

In recent years, CIKA has also funded a solid tumour clinical trials coordinator. This role has enabled many more children at the RCH to participate in clinical trials, increasing enrolment from less than 10% to more than 70%. Another significant investment was the establishment of the Children’s Cancer Centre Biobank. The Biobank holds hundreds of tumour specimens that are essential for childhood cancer research. It is now part of the Australian and New Zealand Children’s Haematology Group BioBanking Network, with samples contributing to research projects around the world. The Biobank is also a reminder that research takes time. Progress often happens step by step, over many years. By collecting and storing tissue samples and data, the Biobank continues to support new discoveries and future treatments long after the original funding was provided.

Importantly, projects funded by CIKA have also helped researchers secure additional grant funding, allowing this work to grow even further.

One of the things I’ve learned through CIKA is that meaningful progress in childhood cancer research only happens because of people who remain committed over the long term. Research takes persistence, collaboration, and ongoing support — and that is exactly what all of you have provided. While there is still a long way to go, there is genuine progress being made. Advances in precision medicine, immunotherapy, and targeted therapies are creating more hope for children and families than ever before. This progress happens because of people like you — people who continue to give their time, energy, and support year after year.

On behalf of everyone at CIKA, thank you for your generosity and commitment. And personally, thank you for helping keep Brian’s memory alive through something positive and meaningful.

Thank you.