Neuroblastoma Australia Fighting for Every Child
Our Case for Support
Investing in Lifesaving Research, Advocacy, and Care
Introduction to Neuroblastoma Australia
Neuroblastoma Australia was founded by Lucy Jones after the loss of her two-and-a-half-year-old daughter, Sienna, to neuroblastoma. Faced with the lack of research, funding, and support for children suffering from this aggressive form of cancer, Lucy turned her grief into action.
Neuroblastoma Australia has grown into a leading charity dedicated to funding innovative research, raising awareness, and advocating for families affected by this rare and deadly disease.
The organisation was created to give a voice to the youngest and most vulnerable members of our society—children who are too young to speak for themselves. Families facing neuroblastoma are often overwhelmed by the demands of treatment, or grappling with
profound grief, leaving them with limited capacity to advocate for better care and outcomes.
Neuroblastoma Australia plays a vital role in funding innovative research, advocating for safer and more effective treatments, and raising awareness to ensure that every child diagnosed with neuroblastoma can not only survive but thrive, free from the debilitating side effects of current therapies. Backed by its global network of neuroblastoma experts through a Scientific Advisory Board, the organisation ensures that only the most promising research is funded, providing donors with the confidence that their contributions will lead to real, impactful change.
In Australia, approximately
50 children
are diagnosed with neuroblastoma each year
Despite advances in treatment, approximately
50%
5x higher
The risk of developing cancer is for childhood cancer survivors
of children with high-risk neuroblastoma do not survive.
The Need
Neuroblastoma is the most common solid tumour cancer in children under five and one of the most aggressive childhood cancers.
Unlike many adult cancers, neuroblastoma primarily affects very young children, who are too young to advocate for themselves. Their families, overwhelmed by the demands of managing a serious illness or coping with
profound loss, often have limited capacity to push for better treatment options. Despite its prevalence and severity, neuroblastoma is classified as rare and receives a fraction of all cancer research funding. Government and pharmaceutical investment in childhood cancers, especially neuroblastoma, remains woefully inadequate.
Underfunding
Only 10% of Government Cancer Research funding is allocated to childhood cancers, of which just 1.7% is awarded to neuroblastoma. This underfunding leaves many research projects and clinical trials unsupported.
Harsh Side Effects
Due to the toxicity of current treatments, children who survive neuroblastoma often face severe, long-term side effects. including hearing loss (up to 60% of survivors), infertility, learning disabilities, and heart and lung problems.
Inappropriate Treatments
Current treatments for neuroblastoma are largely derived from adult cancer therapies. These are not tailored to the specific needs of children’s developing bodies, leading to severe long-term side effects.
We need:
Innovative, child-centric research focused on both curing neuroblastoma and ensuring that survivors can thrive without debilitating long-term consequences.
Advocacy to accelerate the approval and funding of new therapies, as current government processes are too slow for children with aggressive cancer.
Limited Options for Relapse
Approximately 50% of the children diagnosed with aggressive neuroblastoma will experience a relapse. At this stage, treatment options are extremely limited and only around 10% will survive. Families are frequently forced to seek overseas clinical trials, bearing enormous financial and emotional burdens.
Comprehensive support for families affected by neuroblastoma. The treatment journey is long and isolating, and for those who lose a child, the grief is overwhelming. It is essential that families receive the help they need to navigate these emotional and practical challenges during and after treatment.
Neuroblastoma Australia’s Theory of Change
At Neuroblastoma Australia, our mission is clear:
to ensure that all children diagnosed with neuroblastoma not only survive but also thrive, experiencing minimal longterm effects from their treatments. This theory of change is our strategic roadmap, illustrating how our collective efforts, from grassroots activities to innovative research, contribute towards achieving this ultimate goal.
Our Activities
Our Activities are the foundation of our impact. We focus on funding innovative neuroblastoma research to explore new treatment avenues and develop child-centric therapies that are less toxic and more effective. Recognising the urgent need for prompt access to cuttingedge treatments, we advocate for faster drug approvals and policy changes. By raising awareness and funds through community events and building strategic partnerships, we ensure a continuous flow of resources and support to both researchers and families affected by neuroblastoma. These efforts create a robust support system, fostering resilience and hope among families navigating the challenges of this rare childhood cancer.
Building Knowledge
Building Knowledge and Awareness is essential in combatting neuroblastoma. We work tirelessly to increase public understanding of this aggressive childhood cancer and its unique challenges. By educating the public and stakeholders about the need for child-specific treatments, we shift the focus towards therapies that minimise harm to developing bodies. Our direct involvement with families affected by neuroblastoma ensures that first-hand knowledge is shared to support those newly diagnosed. By fostering community involvement, we build a network of informed advocates, ensuring no family faces this journey alone.
Enhancing Treatment & Support
Enhancing Treatment and Support is at the heart of what we do. We aim to develop safer, more effective treatments by supporting clinical trials and emerging therapies that prioritise the well-being of the child. Reducing the toxicity and long-term effects of treatments is not just an aspiration but a necessity. We are committed to expanding family support networks, recognising that comprehensive care extends beyond medical treatment to include emotional and social support for children and their families.
A Research-Driven Future
A Research-Driven Future is pivotal to transforming the landscape of neuroblastoma treatment. By cultivating a sustainable research environment, we promote international collaboration in neuroblastoma studies, bringing together the best minds from around the world to tackle this disease. Supporting young scientists and new ideas is crucial; it ensures a pipeline of fresh, innovative approaches to understanding and treating neuroblastoma. By using a world-class expert Scientific Advisory Board, we ensure that every dollar is strategically allocated to projects with the potential to make the most significant impact.
Our Vision is Ambitious but Attainable:
A world where every child diagnosed with neuroblastoma can survive and thrive, experiencing minimal long-term effects and leading healthy, fulfilling lives. Achieving this vision requires a multi-faceted approach— one that combines cutting-edge research, advocacy, community engagement, and direct support for families. By building on our strong foundations and driving forward with purpose, we can change the trajectory of neuroblastoma from a devastating diagnosis to a disease with effective, childfriendly treatments and, ultimately, a cure.
Our Activities
Fund innovative neuroblastoma research with the guidance of our Scientific Advisory Board, advocate for faster drug approvals and policy change, provide support and resources for families, raise awareness through events, and build strategic partnerships.
Building Knowledge
Increase public understanding of neuroblastoma, educate about the need for child-centric treatments, promote the importance of early detection and diagnosis, foster community involvement and support.
Enhancing Treatment & Support
Develop safer and more effective treatments, ensure access to clinical trials and emerging therapies, reduce the toxicity and long-term effects of treatments, expand family support networks.
A Research-Driven Future
Cultivate a sustainable research environment, foster international collaboration in neuroblastoma studies, support young scientists and new ideas, influence research priorities and funding.
Our Vision
Achieve a world where all children with neuroblastoma survive and thrive, experience minimal long-term side effects, and lead healthy, fulfilling lives.
Projects for which Neuroblastoma Australia
is seeking support
With your support…
We can make a tangible difference in the lives of children diagnosed with neuroblastoma. Every project we undertake brings us closer to better treatments, faster diagnoses, and greater hope for families affected by this aggressive cancer. Your contribution will directly fund initiatives that drive life-saving research, provide vital resources to families, and increase public awareness.
1. Innovative Research into Child-Specific Therapies
2.
Current neuroblastoma treatments are derived from adult cancer therapies, leading to severe long-term health issues for survivors. To address this, Neuroblastoma Australia has funded cutting-edge research to develop safer, child-specific therapies. A recent example is our support for the work of Dr Daniel Carter at the University of Technology Sydney, who is pioneering a personalised treatment approach to tackle drug resistance in neuroblastoma. Using his novel genetic barcoding technology, Dr Carter’s research will track individual cancer cells and identify how they respond to different drugs, allowing him to design optimal drug cocktails tailored to each tumour.
With your support, we can drive more breakthroughs like this, improving survival rates and reducing long-term side effects. Together, we can fund critical pre-clinical research and turn innovative ideas into lifesaving treatments for children.
3. Support for Families with Children Diagnosed with Neuroblastoma A Voice for Better Treatment Options and Improved Access
A neuroblastoma diagnosis plunges families into months of hospital stays, watching their children endure painful treatments. For children with high-risk neuroblastoma, treatment lasts 18 months, with a significant chance of relapse. Families face immense stress, especially if forced to seek experimental treatments overseas, often at great financial cost. Around a third of parents may develop post-traumatic stress disorder, and bereaved families experience severe psychological and health challenges.
With your support, we can provide vital emotional and psychological care to families throughout this journey, including online counselling and tailored support for parents, siblings, and grandparents, helping them navigate the overwhelming challenges they face.
Children with neuroblastoma have far fewer treatment options than adults due to limited investment in childhood cancer research. Many new treatments are not tested for children, meaning they cannot access potentially life-saving therapies. In Australia, regulatory delays and limited clinical trial opportunities further complicate access, often forcing families to seek expensive overseas treatments. This creates an inequitable situation where only some families can afford the care their child needs.
With your support, we can continue to be a voice for these children, driving public awareness to secure essential research funding and advocating for faster approval of new treatments. This will ensure that life-saving therapies are available to all children with neuroblastoma, no matter their financial situation.