About Us Our purpose Our purpose Neuroblastoma is an aggressive childhood cancer and survival rates for the aggressive types are around 50%. Children diagnosed with neuroblastoma are on average just 2 years old. Currently, a third of those who do survive, have long term effects from their actual treatments, as the treatments themselves are so toxic and extensive. We urgently need better, safer and kinder treatments for children diagnosed with neuroblastoma and the only way to achieve this is through supporting the very best research. Our mission is to save young children's lives through improving the efficacy and safety of treatments for neuroblastoma. Our goal is 100% survival so all children diagnosed get the chance to grow up and lead long and healthy lives. Our three main objectives: 1. To raise awareness of neuroblastoma childhood cancer and increase the understanding and the need to support research in this area 2. To raise vital funds for outstanding cancer research into the development of better, safer treatments for children diagnosed with neuroblastoma now and in the future 3. To provide information and support to those affected by neuroblastoma. What we do Neuroblastoma is a complex childhood cancer where many questions remain unanswered. It is not known what causes neuroblastoma and it is not fully understood why some children don't respond to treatment. Research is desperately needed to find out the answers and for a cure to be developed for all children diagnosed with neuroblastoma. We fund leading research projects to save lives. We are committed to ensuring funds raised and donated go to the most promising pre-clinical research and we have robust procedures in place as well as a world-class, expert Scientific Advisory Board who assess applications for funding. The Scientific Advisory Board as well as other global experts review grant applications and assess them in line with the charity's goals of developing better and safer treatments and ultimately a cure. We provide information to families and support through resources on our website and through the opportunity to connect to other families at events and through social networking. Experienced Leadership Lucy Jones brings both personal experience and highly respected professional expertise to her role as Neuroblastoma Australia’s CEO. Since starting the charity in 2012, Lucy has worked tirelessly to raise much needed funds to support vital research. In this time, Lucy has built a reputation for thoughtful advocacy, community engagement, and a deep understanding of the complex challenges around medical care, treatment and outcomes. The following is an excerpt from a recent research project application that outlines Lucy’s capabilities and credentials: Lucy Jones, Founder and CEO of Neuroblastoma Australia, is a seasoned and dedicated consumer advocate for advancing neuroblastoma research and treatment. Her deep personal connection to the cause, having lost her daughter Sienna to neuroblastoma, has driven her to start and lead a charity dedicated to finding better and safer treatments for neuroblastoma. To date over $2.7 million has been raised by the charity for research, demonstrating her commitment and ability to mobilise resources effectively. Her studies in psychology further complement her understanding of patient needs and the broader implications of clinical trials on affected communities. Lucy's engagement with the medical community is evident in her active service on the consumer and community committee for Sydney Children’s Hospital and her involvement with the Children’s Comprehensive Cancer Centre redevelopment project. Such roles have furnished her with a comprehensive grasp of patient care, hospital operations, and clinical trial contexts. She has also been recognised as a Westfield Local Hero for her significant contributions to raising neuroblastoma awareness. Previously, Lucy has been sought out as an Associate Investigator on neuroblastoma research projects, underlining her credibility and expertise in this field. Her hands-on experience, frequent interactions with affected families, and regular attendance at key research meetings equip her with insights crucial for large-scale clinical projects. In light of these qualifications, Lucy Jones presents as an exceptionally qualified consumer advocate, bringing a blend of personal dedication, professional experience, and deep-rooted expertise in the domain of neuroblastoma. How do we raise funds? We raise funds for research primarily through our main fundraising events: Run2Cure Neuroblastoma, Golf2Cure, Cook2Cure, and from fundraising from the community. We currently do not receive any government funding. "The generous support of Neuroblastoma Australia has allowed us to more rigorously test new approaches to treating children with high-risk neuroblastoma and to provide improved individualised information to aid treatment decisions. The success of this Neuroblastoma Australia–funded research has also contributed to additional competitive government research funding for our neuroblastoma research.” Dr. Jamie Fletcher, Children's Cancer Institute What you can do There are many ways you can help us beat the number one toddler cancer, from donating, to holding your own event, buying gifts from our on-line store or attending one of the charity events, you can find out how you can help us here.