What is neuroblastoma? Expand Let's start with the name: neuro = nerves blastoma = a cancer that affects immature or developing cells. So, neuroblastomas are cancers that start in early nerve cells (called neuroblasts) of the sympathetic nervous system. This means that tumours can be found anywhere along this system; most commonly (about 50%) start in the adrenal glands (above the kidney), or near the spine, chest, neck or pelvis. Rarely, a neuroblastoma has spread so widely by the time it is found, doctors can’t tell exactly where it started. Some neuroblastomas grow and spread quickly, while others grow slowly.
How common is neuroblastoma? Expand Neuroblastoma is a rare disease with about 40 children diagnosed with neuroblastoma each year in Australia. There is a chance of 1 in 100,000 of a child suffering neuroblastoma. There appears to be no trend in an increasing number of cases in Australia.
Why does this cancer form? Expand 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.
How is it diagnosed? Expand Neuroblastoma may be difficult to diagnose as symptoms often do not become apparent until the tumour has reached a certain size. Even then symptoms may be subtle and similar to other more common non-serious childhood diseases. As a result it often takes some time before the final diagnosis of neuroblastoma is made. Often parents wonder if they or a doctor should have noticed something sooner, but because it is such a rare disease it is unlikely that a family doctor will ever see a child with neuroblastoma in a lifetime of practice.
How dangerous is neuroblastoma? Expand 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 only 50%. 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.
More information Expand One of our goals as a charity is to provide practical information regarding treatment and hospital stays to neuroblastoma families through our website. We've added a Coronavirus Help Guide and a free activity guide to help families recently and our family support area has more information including: Newly diagnosed - key statistics, causes, risks, detection, diagnosis and staging On treatment - treatments and side effects, clinical trials Post treatment - late effects and relapse Living with neuroblastoma - hospital tips, life outside hospital and once treatment has finished Support services for families Connecting with other neuroblastoma families Sharing your story You can also download our neuroblastoma fact sheet here. Please note that all content provided by Neuroblastoma Australia is of a general nature only. Any medical queries should be directed to your oncologist or medical team.
Information for solicitors and executors Helpful information to help you when assisting your clients to provide a gift in their Will to our charity. Expand Thank you for supporting your clients wishes to provide a gift to Neuroblastoma Australia in their Will. We have included information below that we hope will make advising your clients easier. If there is anything else you need please contact us on [email protected] Key information The information about our charity that must be included in the Will: Correct legal name: Neuroblastoma Australia Incorporated Address: Level 1, 441 Pacific Highway, Crows Nest NSW 2065 ABN number: ABN 74 173 375 414. Neuroblastoma Australia Incorporated is a registered charity with GDR Status. Letting us know Of course you don't need to let us know about a gift in Will but (with your client’s permission) we would certainly appreciate the opportunity to thank them and offer to include them in our charity events. We are working on how to acknowledge and thank supporters that plan to leave a gift to us in their Will and we would certainly like to hear their ideas and yours. Please feel free to contact us with your feedback. More information and resources Neuroblastoma Australia is a member of the Fundraising Institute of Australia and they have provided some excellent material on their Include a Charity website. Areas that you may find interesting: The four main types: residual, pecuniary or specific, percentage or fractional or whole estate The Million Dollar Question video: https://youtu.be/4WhmM5XkEP4 Include a Charity information for solicitors
How to leave a gift in your Will Thank you for considering Neuroblastoma Australia in your Will; every gift we receive is greatly valued and appreciated. Find out more here. Expand Thank you for considering remembering Neuroblastoma Australia in your Will; every gift we receive is greatly valued and appreciated. Whether you already have a will or are writing one for the first time, leaving a gift to Neuroblastoma Australia is easy to arrange. Below is some information to help you through the process. Making a Will A Will is an important legal document designed to ensure your wishes are followed after your death. A Will protects the assets you have worked hard for and helps your loved ones by providing clear directions. You can either write your own Will or get a professional to write the Will on your behalf (such as a solicitor or public trustee). Neuroblastoma Australia have partnered with Australia's top-rated Will writing platform, Gathered Here. For a limited time, Gathered Here is offering our supporters free and unlimited lifetime updates to their Will. Write your Will for free here Types of Wills There are four main types of gifts you can leave in your Will to our charity: Residual gift - giving what remains of your Estate after providing for your family and paying any outstanding commitments. Pecuniary or specific gifts - when you clearly specify how much you'd like to gift to Neuroblastoma Australia. Percentage or fractional gift - essentially gifting a percentage of your Estate to Neuroblastoma Australia. Whole estate - gifting the entirety of your Estate to our charity. Example wording Below we have provided some example wording you can use depending on which type of gift you choose: 'I give to Neuroblastoma Australia of Level 1, 441 Pacific Highway, Crows Nest NSW 2065 (ABN 74 173 375 414) all of my residuary estate <or> <insert %> percentage of my residuary estate <or> the sum of $<insert amount> <or> these assets <list assets> to be used for the general purposes of Neuroblastoma Australia Incorporated and I direct that the receipt of the Treasurer or other duly authorised officer shall be a sufficient discharge to my Executors.' Charity details The details of our charity that you will need: Correct legal name: Neuroblastoma Australia Incorporated Address: Level 1, 441 Pacific Highway, Crows Nest NSW 2065 ABN number: ABN 74 173 375 414. Neuroblastoma Australia Incorporated is a registered charity with GDR Status. Getting advice The above information has been provided to be helpful however, it is not intended to be legal advice. Please be aware that neither Neuroblastoma Australia nor its representatives are permitted to serve as personal representative, executor, trustee or witness for a Will or a Trust. There are online options to assist you to make your own Will however, a legal advisor (such as a solicitor or public trustee) with experience in writing Wills will make sure that you cover all the important aspects of drafting your Will. Each Australian state and territory has a Law Society (see below) that can help you to source a local solicitor and the Australian Government website provides links to the Public Trustee in each state. Let us know if you've left a gift in your will If you generously decide to leave us a gift in your will, please let us know so that we can thank you, and keep you up to date with the impact that gifts like yours are making to children with neuroblastoma. By letting us know, you are also helping us plan our work for the future. Download our gifts and wills summary document here Useful links Here are a few helpful websites with more information regarding Wills: Australian Government information regarding Wills and Power of Attorney and links to the Public Trustee in each state. Things to consider before making a Will from the Fundraising Institute of Australia Making a Will from The Law Society of NSW The importance of making a Will - Law Society of NSW Leaving a gift to a charity in a Will - Include a Charity FIA ACT Law Society Law Society of NSW Law Society of Western Australia Law Society of Northern Territory Queensland Law Society Law Society of South Australia Law Society of Tasmania Victorian Law Institute of Australia