Neuroblastoma Australia Incorporated
Studio 1, Level 1, 441 Pacific Highway
Crows Nest, NSW, 2065
Neuroblastoma Australia is a registered charity established by families and friends affected by neuroblastoma.
Neuroblastoma is the most common solid tumour of childhood. It is almost exclusively a childhood cancer occurring most commonly between the ages of 0-5 years. It is a solid tumour arising from particular nerve cells which run in a chain-like fashion up the child’s abdomen and chest and into the skull following the line of the spinal cord.
Neuroblastoma is a relatively rare disease however it results in significant deaths. Between 2010 and 2014 an average of 100 children died from cancer each year. Of these deaths, 13% of them were children with neuroblastoma (Cancer Qld).
Neuroblastoma is a very complex cancer and there are many types that behave very differently. At one end of the spectrum are benign tumours that may even resolve spontaneously, while at the other end are aggressive tumours with an average survival rate of 40%. The cure rate for these “high-risk” tumours has only improved marginally in recent years but there is clear hope that this rate will change with some new drug discoveries coming through.
Our mission is that all children with all types of neuroblastoma survive and lead a long, healthy life, free from the side effects of their treatment.
Our focus is raising awareness and fundraising for the research needed to make treatments more targeted, more effective and less toxic.
Our belief is that all children have the right to grow up, and by investing today we will save the lives of children in the future.
The organisation has three main objectives:
1) To raise the profile of neuroblastoma – it is the leading cause of death of children under the age of 5 but few have heard of it
2) To increase fundraising efforts targeted specifically at research into Neuroblastoma. We believe it is possible to change the current average survival rate which is 50% for aggressive neuroblastoma. To date over $1.7 million has been raised for neuroblastoma research.
3) To provide information and support for those affected by this childhood cancer. Neuroblastoma is a rare disease and it means a family experiencing neuroblastoma often feel isolated and have no knowledge of this cancer.
Neuroblastoma Australia has several different strategies for supporting children and their families who have a diagnosis of neuroblastoma. These include:
• The Neuroblastoma Australia website which provides access to information about neuroblastoma, links to useful resources, details of the latest research, and advice on living with a neuroblastoma diagnosis.
• A closed Facebook support group for families of children with neuroblastoma providing families with the opportunity to share their journeys and feel less isolated. There are currently 195 members in the group including a moderator.
• A suite of charity fundraising events including Run2Cure, Ride2Cure, Golf2Cure and Sienna’s Gala Dinner. These events raise valuable funds which are used for research into neuroblastoma and also provide children and families with the opportunity to attend these events and become part of a supportive network.
- Total Requested Amount
- Total Raised From Donors
- Remaining Goal
Postcode where activity will take place: 2000
Start Date: 06/02/2019
End Date: 06/02/2020
- Health > People with diseases and illnesses
- Age Groups > Children (0-5)
Field of Interest:
- Health > Medical Research
- Human services > Special population support
Project Summary:Run2Cure Neuroblastoma is a fun run and family fun day organised by the registered charity, Neuroblastoma Australia.
Run2Cure is held each June in The Domain, Sydney and is the charity’s largest fundraising event for research into the aggressive childhood cancer, neuroblastoma.
Families affected by neuroblastoma, friends, running groups, school and corporate teams, come together to show their support by participating in either the 1km Little Heroes Walk, or the 3km, 5km or 10km runs. There is also live entertainment all day and plenty of fun day activities.
In 2018, more than $270,000 was raised for research with 3,200 runners and an additional 3,000 attendees. Sunday, June 2, 2019 will be the 6th time this event will be held and is expected to be the biggest and most successful yet.
Neuroblastoma Australia President, Lucy Jones, started Run2Cure back in 2013 with a group of friends and 400 runners in Sydney Park. Since then, it has succeeded Lucy’s wildest expectations, with the driving force being the deep desire to find a cure for neuroblastoma.
Profits from Run2Cure go to leading neuroblastoma research projects. One research project that Run2Cure has contributed to for the last 3 years is the drug CBL137. The next stage of this promising drug is a combination with HDAC inhibition to increase its efficacy.
This event not only raises valuable funds which are used for research into neuroblastoma, it also provides children and families with the opportunity to attend the events and meet other families affected by neuroblastoma, building a supportive network.
Neuroblastoma Australia is requesting assisting through this application to fund the Neuroblastoma Family Village area at Run 2 Cure Neuroblastoma 2019. This area is set aside for the children and their families living with neuroblastoma to enable them to come together for support and encouragement. Fun activities are available for the children, providing them with some joy in what are otherwise lives filled with hospitalisation and treatments. Funding is required for marquees, generator hire, inflatable slides, pony rides and other fun activities.
Neuroblastoma is a relatively rare disease and it means a family experiencing neuroblastoma often feel isolated and alone. The side effects of the treatment are significant and can considerably impact the longer term health of the child. In addition, there is no cure for children who are in the high-risk classification and have relapsed. Providing support to children, their parents, siblings and their wider family is essential to maximise the quality of life of all involved. The Neuroblastoma Village at Run 2 Cure Neuroblastoma provides the opportunity for parents of children living with neuroblastoma to meet in a fun-filled, relaxed environment. It is also provides a visual reminder to the people participating in Run 2 Cure of the reasons they are there.
Project Outcomes:The mission of Neuroblastoma Australia (NA) is to raise awareness of neuroblastoma childhood cancer, raise much-needed funds for research into neuroblastoma and provide information and support to those affected. Funds from NA’s events and donations have primarily gone to Children’s Cancer Institute (CCI). Cancer Council NSW has also received funding for specific neuroblastoma research projects.
To date over $1.6 million has been donated to Children’s Cancer Institute into finding new improved treatments for children with neuroblastoma and $161,591 has been donated to Cancer Council (NSW).
The Neuroblastoma Village is an area to support families with neuroblastoma, enabling them to come together to relax, share their experiences and for the children to have some joy in their lives.
Outcomes of the Run 2 Cure event will be measured through participation numbers; funds raised; and increased awareness of the disease. Further, outcomes specifically for the Neuroblastoma Village will be measured through the number of children and their families in attendance, feedback from the families, and the smiles on the children’s faces.
Total Budget: $12,500
|Income item||Price ($)|
|Donation from ACF Donors for Neuroblastoma Village||12,500|
|Expense item||Price ($)|
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