Hi friends and family,

On Saturday, 12th February 2022 I am running the Tarawera 50km ultramarathon in New Zealand for my friend Sam.

Sam was diagnosed with Neuroblastoma this year and has a gruelling 18-24 months of treatments lined up of chemotherapy, surgery, high dose chemotherapy, immunotherapy and radiotherapy. Sam is a brave, funny, loving little guy and although cancer is scary and treatments are painful, Sam’s family and I are feeling hopeful for his future, and for other kids who have been, and will be, given a diagnosis of Neuroblastoma as there are some incredible minds conducting promising, lifesaving, exciting research.

For those wondering how they can help Sam, his mum Beck, dad Tom, and sister Izzy, donating to support neuroblastoma research is something you can do that will give Sam's family hope and help them feel supported as they go through the next 18-24 months.

Neuroblastoma is a devasting childhood cancer with the average age of diagnosis being just two years old. With survival of rates for aggressive neuroblastoma at only 50%, this disease claims more lives of children under the age of five than any other cancer. Those who do survive often have serious side effects from the current treatment protocols, including hearing loss, infertility, bone issues, learning difficulties and an increased risk of a secondary cancer before they are 30.

There is currently no cure for relapsed neuroblastoma patients – although there is clear potential to develop one, as the new drugs are showing definite progress. We need to improve treatments so they are more effective and less toxic - the way to do this is through research.

Neuroblastoma Australia is a registered charity founded by families with children affected by the disease and has raised over $1.7 million for research into a cure for this complex cancer which almost exclusively affects little kids.

The Neuroblastoma Australia Scientific Advisory Board selects promising research projects to fund using community donations. Childhood cancer research receives around 11% of government cancer research funding, meaning that the community provides the means for scientists to find better, kinder and more effective treatments.

Some examples of research being funded currently:
• Trials for combination therapy - an existing medication, DFMO (an inhibitor of a rate-limiting enzyme in polyamine synthesis), and combining it with a polyamine inhibitor, AMXT 1501 (preclinical research – Samal et al 2013; Polyamines are molecules which fuel the rapid growth of neuroblastoma cells). Neuroblastoma Australia funded the original research studies, and now drug trials in Australia could be started in 2022 (with Children’s Cancer Institute Australia). Exciting early trials showed no adverse side effects.
• Another project using Chimeric Antigen Receptor (CAR) T-cell therapy, currently used in some types of leukaemia, which programs a child’s immune cells (known as T cells) to destroy the cancer cells. This therapy has not worked for neuroblastoma patients so far, however new research has identified a drug which has inhibited the MYC oncogene, potentially enabling immune cells to fight the tumour. This will provide a more effective and less toxic way to treat neuroblastoma.

The amazing projects receiving funding can be found here: https://www.neuroblastoma.org.au/Pages/Category/current-projects
This is where your kind donations will go, to make a difference for children fighting neuroblastoma.

Please donate, if you are able, to give me that push over the 1000kms run in training in the hot Aussie summer over the next few months – and to complete the 50km in the tough NZ terrain to get to the finish line.

Stephanie Kearton