Where does funding go?

Funds from our events and donations go to Children’s Cancer Institute Australia and Cancer Council NSW for specific neuroblastoma research projects. We donate 70% from events to these research projects.

To date over $1.3 million has been donated to Children’s Cancer Institute for neuroblastoma research. $116 000 has been donated to Cancer Council (NSW).

Children’s Cancer Institute, Randwick

The Run2Cure event has supported the research of the drug called CBL0137 since 2014. This drug has been researched by Children’s Cancer Institute and appears to be promising at this stage – http://www.sbs.com.au/news/article/2015/11/05/experimental-drug-giving-hope-kids-cancer

Please see below for the update provided by Children’s Cancer Institute

Neuroblastoma Australia have been supporting Children’s Cancer Institute’s research into finding new improved treatments for children with neuroblastoma since it was first founded, in this time total funds raised for this research are $1,301,126.

Over the past 4 years Run 2 Cure has raised a total of $312,593, these funds have been directed towards research into a new potential treatment CBL137. Research into this drug has been completed by groups led by Professors Michelle Haber, Murray Norris and Glenn Marshall.

CBL137 is a novel drug recently developed for adult cancer in USA that had not been tested for childhood cancer until the Institute looked at its qualities to target neuroblastoma tumours; specifically, those types of neuroblastoma that are linked to the MYCN gene which produces a protein in high volumes that is proven to create the metabolic environment for this cancer to grow aggressively.

Early results in our laboratory models show the effectiveness of CBL137 in reducing aggressive neuroblastoma tumours which have made this a key focus for these research groups with significant progress made. Not only does this research indicate the drug is very effective at reducing the cancer when used in combination with chemotherapy, but also that CBL137 does so with few damaging side effects because it does not damage DNA. It is DNA damage that is responsible for these side effects and if CBL137 can mean the cancer can be treated with lower dosages of toxic chemotherapy then this will not only improve cure rates but also reduce long term damage to the children treated.

In 2014 the early results of this work were presented at the international ANR (Advances in Neuroblastoma Research) Conference in Cologne and were recognised as the best presentation of this conference. (copy of presentation provided)

In November 2015 the first paper explaining the results of CBL137 research were published in the international journal Science Translation Medicine (copy provided). This also led to significant media interest and articles in print, on radio and TV including ABC and SBS.

At present CBL137 is in clinical trial for adults in USA and Russia, these trials will establish the optimal dosage required to kill the cancer without serious side effects to patients, currently the trials are continuing due to the success of the drug and the lack of side effects suffered. As soon as the adult clinical trial is completed the dosage for children will be established as 80% of that identified as optimal for adults.

The next phase of this project will be a clinical trial of CBL0137 for children at leading children’s cancer centres in the United States and at Sydney Children’s Hospital, Randwick, conducted through the US-based Children’s Oncology Group (COG), the largest children’s cancer study group in the world. This is the first time that a COG trial of this sort would be made available to Australian children.

The clinical trial in both countries will be led by Dr David Ziegler, a senior researcher at Children’s Cancer Institute and Head of Clinical trials at the Kids Cancer Centre, Sydney Children’s Hospital (Randwick).

Cancer Council NSW

The Run2Cure also supported a project sponsored by Cancer Council NSW. The project was called “The critical role of the long intergenic noncoding RNA MALAT1 in Neuroblastoma”. Most patients with one particular type of neuroblastoma, caused by a protein called N-Myc, die because the tumour spreads throughout the body. The researchers are looking at what genes allow the tumour to grow and spread, and test if drugs can stop those genes and stop the tumour from multiplying. This initial research was completed in 2015 and showed enough promise for it to be now sponsored by the Health and Research Council.

On 1st September, the sails of the Sydney Opera House will be lit in gold to mark the start of Childhood Cancer Awareness Month. There will be a candlelit vigil you can attend to honour all children diagnosed with cancer. For details see below. To show your support, you can also buy yellow wristbands: www.neuroblastoma.org.au/product-category/wristbands/ ...

September is International Childhood Cancer Awareness month. Join us at the Sydney Opera House on 1 September for a candlelight vigil and watch the Opera House sails turn gold & help raise awareness for childhood cancer research while honouring all children diagnosed with cancer. We are inviting all families & friends touched by childhood cancer to attend, or submit a photo for our digital tribute wall which will celebrate all kids affected by childhood cancer – past and present, and honour all the children who we couldn't find a cure for soon enough. To secure your place or provide a photo for the tribute wall, please email marketing@ccia.org.au Stay tuned for further posts with more information #gogoldforkids The Kids' Cancer Project Sydney Children's Hospital Foundation The Children's Hospital at Westmead

Neuroblastoma Australia
Ste 3, 165 Sailors Bay Rd
Northbridge NSW 2063
0406 991 606
Neuroblastoma Australia Incorporated is a registered charity with GDR Status . ABN 74 173 375 414.