The mission of Neuroblastoma Australia is to raise awareness of neuroblastoma childhood cancer, raise much-needed funds for research into neuroblastoma and provide information and support to those affected.

What is Neuroblastoma?

Neuroblastoma is a solid tumour of childhood cancer. It develops from nerve cells called “neuroblasts”. These cells are most commonly found in the adrenal glands (above the kidney) and along the tissues around the spinal cord. Most tumors start in the adrenal glands.

There are no known reasons as to why this cancer occurs and there are no clear environmental links. There are rare cases where neuroblastoma runs in families due to a genetic mutation, but in most cases there is no known genetic cause.

Neuroblastoma is a very complex cancer and there are many different 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.

We need to improve treatments so they are more effective and less toxic and the way to do this is through research.

Key statistics about Neuroblastoma

  1. Neuroblastoma claims more lives of children under the age of 5 than any other cancer.
  2. The average age of diagnosis is just 2 years old.
  3. The average 5-year survival rate for aggressive neuroblastoma is only 50%.
  4. A third of the survivors of neuroblastoma have long-term side effects from their actual treatments due to the toxicity of them. Side effects include hearing loss, infertility and an increased risk of getting a secondary cancer.

By participating in Run2Cure Neuroblastoma and raising money for much-needed research, you will help us get closer to finding a cure.

Latest Research

Run2Cure supports leading neuroblastoma research projects. One such project is the development of a drug CBL137 and assessing its potential combined with another drug (eg panobinostat) to increase its efficacy.

This research is being conducted by the Children’s Cancer Institute at Randwick. The drug has shown promising results so far and it is hoped a paediatric clinical trial will result in the near future. Please visit www.neuroblastoma.org.au for more information.

Professor Murray Norris, Deputy Director and Dr Toby Trahair, Clinical Doctor at the Children's Cancer Institute talk about why more funding is needed for research into neuroblastoma.

What is Run2Cure Neuroblastoma?

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.. Click for more detail about the 2019 event.

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. Read more here.

Team Huey

Who is Neuroblastoma Australia?

Neuroblastoma Australia is a registered charity. Its origins date back to 2008 when Lucy Jones started fundraising after her little baby girl Sienna was diagnosed with high-risk neuroblastoma in 2008.

In 2010, another Mother, Michaela Flanagan who also had a little baby girl, Ciara, diagnosed with neuroblastoma joined Lucy and the charity Neuroblastoma Australia was created.

Lucy’s little girl, Sienna Hoffmann, tragically lost her battle to neuroblastoma when she was just two and a half years old and remains the inspiration behind the charity to this day.

Ciara is a survivor. This sadly represents the reality of aggressive neuroblastoma as currently only half of the children diagnosed survive.

The mission of Neuroblastoma Australia is to raise awareness of neuroblastoma childhood cancer, raise much-needed funds for research into neuroblastoma and provide information and support to those affected.

The organisation is also focused on creating networks and providing information about the disease to families affected by neuroblastoma.

To date, more than $1.7 Million has been raised through a number of peer-to-peer and charity organised fundraising events, the largest of which is Run2Cure Neuroblastoma.

The event was held for the first time in 2013 in Sydney Park and due to its success moved the location to The Domain near Sydney’s CBD. Read more here.

Other events hosted by Neuroblastoma Australia include Sienna’s Gala Dinner, Golf2Cure Neuroblastoma and Ride2Cure Neuroblastoma.

The Neuroblastoma Australia Committee consists of 7 members, 3 of which have been directly affected by neuroblastoma and one research doctor. The charity is audited by Moore Stephens Accountants.

Funds raised go into supporting leading research projects. The Children’s Cancer Institute has received $1.6 million from Neuroblastoma Australia.

For more information about Neuroblastoma Australia please visit: https://www.neuroblastoma.org.au