Neuroblastoma Australia: Great Aussie Charities You’ve Never Heard Of…
The essential Neuroblastoma Australia is featured this week on the Giveblog. Their mission is to ensure all children diagnosed with different types of neuroblastoma survive and lead a long, healthy life, free from the side effects of their treatment.
Why is this a problem?
Neuroblastoma is an aggressive childhood cancer which claims the lives of more children under the age of 5 than any other cancer. Currently only half of the children diagnosed with aggressive neuroblastoma will be alive 5 years after diagnosis — a third of those who do survive will have long term side effects from their actual treatments, including secondary cancers. hearing loss, infertility and learning difficulties.
Where did it all begin?
When my 9 month old baby girl Sienna was diagnosed with neuroblastoma . I was shocked that the disease existed, that treatments were not better and that there was not more being done about it. Sienna battled the disease and was in remission for 11 months before she tragically relapsed.
Sienna passed away when she was just two and a half years old. Having witnessed this terrible disease, I couldn’t just walk away and say that that was it … it just is not acceptable that these little children are not getting better treatments. They have no voice, they are a minority and due to low numbers, they do not represent an area for large commercial companies to invest in research. This is the way it currently is, but it does not have to stay that way.
A day in the life at Neuroblastoma Australia:
Every day tends to be different as we have to be responsive to neuroblastoma families as well as develop and execute fundraising activities. We are also very small so many hats are worn!
Today it started with checking our charity Facebook and emails followed by a discussion with our fundraising platform provider on how we can increase fundraising at our events through more targeted and compelling emails. I then had a phone conference with a provider of a work place giving and volunteer website to see how we could use it more effectively. I then did one hour of finance, reviewing how we were tracking compared to previous years and organised invoice payments.
Then liaised I with a Mum who is in currently in hospital with her little girl who is fighting neuroblastoma and is three quarters through the very extensive and tough 12 month treatment program.
The current treatment phase is very tough so I try and offer some support having been there myself. I then get back to events and prepare for a Gala Dinner committee meeting I have the following evening and also check the status for a charity stall we are doing in 2 days time at a shopping centre!
Impact Story:
The main event we organise is called Run2Cure Neuroblastoma. It started in 2012 in Sydney Park and we then managed to move it to the Domain in 2013. The event has a fantastic element which is the Little Heroes 1k fun walk for children 5 and under with parents — a reflection of the profile of the disease.
The event has now raised over $500 000 for research into a drug called CBL137. This drug was discovered by Children’s Cancer Institute in 2012 and through their research they have established that it could be a very promising drug to use in the fight against neuroblastoma. The drug has the added benefit of low toxicity which means it could help reduce the long term side effects many of the children currently suffer from.
The drug has now gone into adult clinical trial and it is hoped it will go into paediatric clinical trial in Australia and USA next year. In the mean time, we are continuing to fund research of CBL137 as the Children’s Cancer Institute have discovered it will be even more effective if combined with other drugs. By supporting this drug for the last 5 years, it is really exciting to see the results are so promising and based on favourable clinical trial results, it could become part of treatments in the future and improve surivival rates. That means saving young children’s lives and that’s what we are about.
What do you do with your donations?
Donations are used by the charity to support research and to support the charity. We have donated over $1.5 million to Children’s Cancer Institute for their research. For 6 years we were a volunteer charity and donated over 95% but we realised we had to invest in staff and systems to develop the charity.
Since 2016 we started to retain some of the funds to cover costs and to invest in software, marketing and future strategy. This year we are retaining about 50% of all donations but our goal is of course to improve on this over the next two years. We are hoping to get more sponsorship and obtain a few grants which would help us be able to donate a higher percentage of donations.
Are you Tax Deductible? Yes
Run2Cure Neuroblastoma 2018 is being held June 3rd. To find out more and get connected to Neuroblastoma Australia go to the following links:
Facebook Link:
https://www.facebook.com/NeuroblastomaAustralia
