Neuroblastoma Australia Newsletter 1 - May 2019

My daughter loved frangipanis. Depending where you live, you might still be able catch sight of the beautiful blooms this time of year. The frangipani became our logo for the charity as it was my little girl Sienna’s favourite flower. It has become a wonderful symbol for our charity – a flower precious and beautiful like our children and it has become one way of us raising awareness of neuroblastoma.

I know neuroblastoma is not well known in the community; most Australians wouldn’t even be aware of it, despite this disease taking the lives of more children under five than any other cancer. Sienna endured six rounds chemotherapy, surgery, a stem cell transplant and radiotherapy and yet, despite her extraordinary resilience, could not overcome the aggressive form of neuroblastoma she had, and we tragically lost her in February 2010 when she was just two and a half years old.

Nine years later I am still fundraising because I believe that all children should get the chance to grow up – fulfil their potential and live long and healthy lives. The only way to do this, is to get treatments which tackle every type of neuroblastoma successfully and don’t leave lasting long term side affects. The only way to get better treatments is through research and that is what our focus as a charity is. We are five months into 2019 and I’m delighted with what our small charity has accomplished with your help.

Thank you for helping us increase the amount of research into neuroblastoma, to fund leading scientists who can unravel more of the mystery of neuroblastoma, and to ultimately to work towards a cure for this disease. Whether it’s by raising awareness by sharing our social media posts, supporting our events (such as Run2Cure Neuroblastoma or Sienna’s Gala Dinner), buying merchandise from our online shop, signing up for workplace giving or participating in one of our community fundraising initiatives, it all helps. To date over $1.9 million dollars has been raised by our supporters and invested in research. As $100 000 a year funds a scientist, this amount does really make a difference. Please do continue to be part of the solution to neuroblastoma childhood cancer.

Thank you.

Lucy Jones
President Neuroblastoma Australia

Our inspiration


The new year began with introducing some very special children; our Run2Cure Neuroblastoma Superheroes for 2019.

Neuroblastoma is one of the most aggressive cancers that exists and each month, one of our incredible families have told their personal journey of diagnosis and treatment.

Visit our hero pages to read their full stories and add your support to their teams who will be taking part in Run2Cure on Sunday 2 June in Sydney’s Domain.

Our final hero for May will be included in our next newsletter.

Nixon

This sunny little 3-year-old, has recently completed a gruelling 20 months of treatment which included a total of 289 days in hospital.

‘Words cannot describe the amount of love that we have for our amazing little man. Always a cheeky smile on his face,’ Nixon’s mum Tameka.

Visit Nixon's page.

Saskia

In a matter of weeks Saskia went from a happy healthy 22-month-old toddler to one who was gravely ill. Her family's neuroblastoma journey can only be described as physically and emotionally exhausting with more than 140 nights in hospital in 2018 and many short- and long-term side effects from the treatment.

‘We have a new appreciation of the spirit of our daughter, and all small children with cancer, particularly their resilience and ability to approach each day anew.’ Saskia’s dad Duane.

Visit Saskia's page.

Adrian

After being diagnosed with Stage 4 Neuroblastoma in 2012, Adrian has endured six years of treatment with a determination that has made his parents Bernadette and Nick incredibly proud.

‘I can see Adrian one day being amazing. I just want him to be happy.’ Adrian’s mum Bernadette.

Visit Adrian's page.

Kitty

This gorgeous little girl was diagnosed with Stage 4 neuroblastoma when she was just four years old.

“We realise that although we’ve been through a great deal, we are one of the lucky ones to have our beautiful daughter here with us.” Kitty’s mum Karen.

Visit Kitty's page.

Penny

Just before Penny turned one, her life and the lives of her family changed forever when a slow growing tumour enclaving Penny’s aorta and close to her spinal canal was discovered.

‘Such a beautiful smile and cheeky sense of humour hides a story of trauma, tears and immense pain.’ Penny’s mum Bronya.

Visit Penny's page.

Neuroblastoma Awareness Day - 2 February 2019

Frangipanis filled the online space as families and friends posted photos and drawings of the gorgeous flowers to raise awareness of neuroblastoma on 2 February.

Children come second in the world of cancer and it’s only when we raise our voices will we ensure that more funds into targeted research programs. It was an incredible day which showcased hope, stories of success and sadly of tragedy.

Gallery 307

This year Gallery 307 Art School hosted a wonderful Frangipani Exhibition during February with all artists donating their work in order to raise funds for the charity. An outstanding $1,193 was raised!

Earlier in the year on 7 January, the gallery ran a frangipani inspired art workshop for their junior artists. We showcased the gorgeous works through the Neuroblastoma Australia Facebook page as part of our drive to raise awareness of neuroblastoma on 2 February.

Neuroblastoma Australia Greeting Cards

Seven of the junior artworks were chosen and were developed into greeting cards which are still available to purchase for $10 through our online shop.

We also took part in International Cancer Day on 15 February by encouraging our community to consider all children, their carers, supporters and specialists who are impacted by childhood cancer.

Events

Sienna's Gala Dinner

Sienna's Gala Dinner took place for the sixth time on Friday 1 March. This year we were honoured to have 12 neuroblastoma families supporting the event and Stephanie Dunstan did an amazing job with her speech about her daughter Saskia. We were also lucky enough to have Mark Beretta from Chanel 7 as MC and the amazing Amelia Farrugia singing.

Over $100,000 was raised on the night thanks to our incredible supporters, sponsors and over 80 volunteers!

Photos from the night and a list of our supporters are available through our event page.

NAB RunWest

164 runners in the inaugural NAB RunWest chose to support our charity through their registration which helped raise $1000 ! Kylie and Roy Skeen did a superb just of fundraising $350 on behalf of their granddaughter Willow. At 22 months, Willow was diagnosed with Stage 4 High Risk Neuroblastoma. She celebrated her sixth birthday this year and her grandparents will be joining us again at Run2Cure Neuroblastoma on 2 June.

Research update

Our mission is that all children with all types of neuroblastoma survive and lead a long, healthy life, free from the side effects of their treatment. Our focus is raising awareness and fundraising for the research needed to make treatments more targeted, more effective and less toxic. Our belief is that all children have the right to grow up, and by investing in research today we will save the lives of children in the future.

It is vital that we make the most use of the funds we raise and with this in mind we have created a scientific review board made up of three international experts in the field of children’s cancer. We will be in a position to announce the names of our board next month.

We currently are funding a range of promising research projects at The Peter MacCallum Cancer Centre, Kids Cancer Centre and The Children’s Cancer Institute. For more information regarding these projects please visit our ‘Where does funding go?’ page.

Coming soon

Run2Cure Neuroblastoma

On Sunday, 2 June Run2Cure Neuroblastoma 2019 will be taking over The Domain, Sydney with a fabulous fun day plus fun runs for every age. The best part is you'll be supporting Neuroblastoma Australia to raise funds for better, kinder and more effective treatments for the children's cancer neuroblastoma. Run2Cure has raised an incredible $750,000 for research since 2014 and with your support, we’re aiming to reach the $1 million dollar mark.

Registrations are still open for our 3k, 5k and 10k races and we have training plans from Pulse Performance and videos from Olympian Chloe Esposito to help keep you motivated.
For the younger family members, we have the 1k Little Heroes (for families with a child 5 and under) and the a 1k Junior Dash (for speedy 6 to 10 year olds).

We’ll also have a host of family activities on throughout the morning including sports, face painting, jumping castles, rock climbing, pony rides and the wonderful animals at the Taronga Zoo Sydney's Zoomobile! Did we mention there will also be FREE Live entertainment with the The Jitterbugs, Kiki + Pascal and Errol H Renauld & Caribbean Soul? It’s going to be a fantastic day out for a great cause.

Register today through: https://run2cure.org.au/

Walk2Cure Neuroblastoma

Walk2Cure Neuroblastoma is a new way to make a difference in your own time in your own way. Just walk 2222km in your own time at your own pace. It may take 12months or 2 years but let us know when you finish, and you will be awarded a Walk2Cure medal in recognition of your achievement.

The event is the brain child of our super supporter Steve Taylor who you may remember from Ride2Cure Neuroblastoma last year; where he cycled an epic 2222km from Brisbane to Adelaide to raise awareness of neuroblastoma. He also collected an amazing $7500 for vital research projects.

You can join up, donate or support the team through: https://makingadifference.gofundraise.com.au/page/Walk2Cure2019

New Neuroblastoma Australia Website

We’re working hard on a new website for Neuroblastoma Australia, one which helps us to run our many events and support our families by providing relevant, engaging and easy to find content regarding neuroblastoma.

We’ll have more news and images to share with you in the weeks to come.

Making a world of difference

We are very lucky to have wonderful supporters who volunteer their time and put an enormous amount of energy into helping our small charity.

Thank you

Thank you so much to Wylie, Maggie, Oliver and Leo for their sweets stall which helped raise $60.

A big shout out to Lior and his dad who organised to shave their heads to raise funds for neuroblastoma and smashed their original goal to raise a final total of $2015.

Special thanks to our friends at North Shore Runners and our wonderful photographer Kirsten Delaney who helped us get some wonderful photos for Run2Cure Neuroblastoma 2019.

The team at Sleek Boutique Retail who collected $250 to support vital research funds.

Thank you so very much to Newcastle Permanent who chose us as their charity last year at the request of one of our neuroblastoma families. They raised a colossal $15,944 inspired by the story of little Indianna who sadly passed away in April last year.

Getting involved

We’re a very small charity but with your support we can make a big difference. Visit our ‘How you can help’ area of our website for information on everything from workplace giving, to buying an entertainment membership for mum, or a cute toy for your kids, setting up a community fundraiser, volunteering your time or sponsoring one of our events.

It’s tax time very soon, so please consider making a tax-deductible donation today. Become a regular giver; even $10 a month makes a huge difference to a small charity like ours.
Donate here today!

News that's right for you

Are you a family or friend who has been affected by neuroblastoma?

We are developing a Neuroblastoma Family eNewsletter. If you would like to be kept up to date on the latest news and information for our neuroblastoma families, please email us on info@nb.org.au

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Neuroblastoma Australia
Level 1,
441 Pacific Highway,
Crows Nest NSW 2065
0406 991 606
info@nb.org.au
Neuroblastoma Australia Incorporated is a registered charity with GDR Status . ABN 74 173 375 414.