OUR

LEGACY AMBASSADORS


Our extra special big hearted brains.

Virginia and Pippa Rea

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In March 2015, Virginia’s daughter Pippa, aged 11, died of a DIPG (Diffuse Intrinsic Pontine Glioma), the most aggressive form of paediatric brain cancer, which only occurs in young children. Initially diagnosed in June 2013, Pippa was the inaugural recipient of the RCD Foundation’s Yoga and Music Therapy programs and won a special place in our hearts. Pippa’s tumour was donated post mortem to the RCH Tumour Tissue Bank, resulting in the sharing of live cell lines across the world for research into paediatric brain cancer. A trust recognising this important contribution has since been established in Pippa’s name at the Tissue Bank. In recognition and memory of Pippa, RCDF are the major annual contributor to the trust and its work into paediatric brain cancer research. Virginia continues to be an avid supporter, fundraiser and advocate of the RCD Foundation.
Make a donation in Pippa’s name

Penny and Zoe Stanley

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In March 2017, 5-year-old Zoe Stanley was diagnosed with a rare and incurable giant cell glioblastoma multiforme tumour. Zoe was an incredible and happy little girl – artistic, brave and obsessed with everything unicorns, butterflies and rainbows. After learning of Connor’s Run during a treatment at Peter Mac, Zoe’s family immediately formed the team ‘United Unicorns for Zoe’. The Stanley family and their friends rallied their local Geelong community to raise more than $50,000 for Connor’s Run and brain matters. Unfortunately, Zoe was too unwell to attend the day, and in December 2017, just nine months after diagnosis, Zoe lost her fight. Zoe’s mum Penny made a promise to her little girl she would do all she could to help others facing the same fight, we’re in awe of her strength and forever grateful for their support in changing the odds.

We’re proud to announce the appointment of a dedicated brain tumour clinical trials coordinator at the RCH over two years in Zoe’s honour. The Zoe Stanley Early Phase Clinical Trial Coordinator, Rebecca Sgambellone, will help allow clinicians open studies offering new and exciting therapies to the children of Victoria with brain cancer.
Make a donation in Zoe’s name

Marisa and Marcus Rosin

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Marcus Rosin was just four years old when he was diagnosed with an ependymoma. For three years his family believed he was in the clear, but in 2012 Marcus relapsed with the tumour spreading to his spine. Obsessed with superheroes, Marcus’ parents say he was the real superhero. Despite years of gruelling treatments, Marcus never complained, always telling his parents not to worry, everything would be ok. But in 2014, at nine years old, Marcus lost his fight. Since losing Marcus, his mum Marisa has been working hard to change the odds for other families, taking part in Connor’s Run and founding the Marcus Rosin Fund through the Children’s Cancer Foundation. Marcus was treated by Dr. Jordan R. Hansford, and it’s now Marisa’s mission to fund one of Dr. Hansford’s biobanking projects, to improve the odds for future families.

Martin and Olivia Phelan

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In January 2017, 15-year-old Olivia Phelan was diagnosed with an ependymoma. The shock diagnosis saw Olivia undergo major surgery, which unfortunately could not remove the entire tumour. Thankfully, the Singapore-based family were home visiting family in Melbourne during Olivia’s diagnosis. Meaning, Olivia was treated by Dr. Jordan R. Hansford – an oncologist RCD works with closely and was eligible to take part in the AIM Brain Project, allowing rapid access to the best and most accurate diagnostic information about her tumour. When Olivia’s dad Martin realised it was the RCD Foundation who funded the AIM initiative, he decided to take action. In March 2017 Martin organised a bike ride around the island of Singapore, raising more than $51,000 to support the RCD Foundation in continuing programs like AIM. Olivia has since completed her treatment and is back at school, enjoying getting back to normal life.

Kellie and Wyatt Crampton

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Wyatt Crampton was diagnosed with an anaplastic ependymoma brain tumor a week before turning 1yo in early 2013. In the three years that would follow, Wyatt underwent four major brain surgeries and one spinal surgery to remove tumor. He received chemotherapy and 90 rounds of radiation. As a result of the surgeries and treatments, Wyatt suffered from respiratory issues, lost vision and hearing in his left side and had balance issues. None of this could stop him. Wyatt was never affected mentally, and his mum Kellie says he was a very clever boy with a love of building complex puzzles and lego. Wyatt even went to mainstream Kindergarten while still receiving treatment. Wyatt always wanted to keep fighting and was largely motivated by his big brother, Oscar, who is only 20 months older than him. Sadly, in 2017, two weeks before his fifth birthday, Wyatt lost his battle. Wyatt was one of the RCD Foundation’s first Music Therapy recipients, a resilient little boy who we’ll always remember.

Harry Dunn

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Harry Dunn is a survivor. He has faced, as a teenager, one of life’s cruellest obstacles – a brain tumour. Harry is one of the lucky ones, his brain tumour was benign. He had a successful surgery and is now living his life, a different life, for sure. He has to deal with tiredness uncharacteristic for a young man and eyes that are much more sensitive. But his life is his to live. Harry could have moved on from this experience, hoping to put it all behind him. Instead, he has embraced our charity, enthusiastically taking part in Connor’s Run each year and amassing a large cohort to run and fundraise along with him. He is dedicated to giving back and helping other young people deal with the same cruel diagnosis but with a much crueller prognosis.

Grace and Liam Money

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Grace Money was only four years old when she was diagnosed in late December 2017 with an inoperable brain tumour shortly after a family holiday to Tasmania with her dad Liam, mum Jo and two sisters Ellie and Poppy. Grace fought the cruel disease courageously, undergoing six weeks of radiotherapy treatment at the RCH and Peter Mac to shrink the tumour. A happy, vibrant and forever smiling little girl, Grace loved rainbows, unicorns, whale sharks, spider monkeys and chickens. Post radiation treatment, Grace was able to swim with dolphins and interact with as many animals as she could. Animals brought so much joy and happiness to Gracie. Sadly Grace lost her battle on October 2nd, 2018 at just 5 years of age. Her dad Liam and mum Jo have been working tirelessly to change the odds for other families, by raising awareness and funds through participation in Connor’s Run and hosting Gracie’s Gift, an event held at Riverside Cricket Club, with money raised supporting the RCD Foundation and the McGrath Foundation respectively. Make a donation to Gracie’s Gift.

Dustin Perry

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In 2013 Dustin Perry’s then five-year-old daughter, Chloe was diagnosed with brain cancer and was treated over four years, unsuccessfully. The dad of three was appalled by the lack of funding given to the disease, so in April 2017 Dustin wrote to then Prime Minister, Malcolm Turnbull regarding the low survival rates of brain cancer and the lack of effort and funding by the government. The letter was published in The Australian and soon went viral, with Dustin making a number of appearances on Ten’s The Project. After meeting with Malcolm Turnbull and the Minister for Health Greg Hunt, a brain cancer roundtable meeting followed. This resulted in the launch of the Australian Brain Cancer Mission in October 2017. Dustin’s sheer determination also led to the Federal Government co-funding RCDF’s AIM Brain initiative. Dustin is a member of the Strategic Advisory Committee for ABCM at Cancer Australia. He’s currently working alongside the Minister for Health, Liz and many others in increasing funding for The Australian and New Zealand Children’s Haematology/Oncology Group (ANZCHOG).

Olivia and Carol Carland

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In October 2012 Olivia Kate Carland was diagnosed with a brain tumour which was later confirmed as a Diffuse Intrinsic Pontine Glioma (D.I.P.G.).
Olivia loved life and touched everyone she met. She was involved in sporting activities including basketball, netball, dancing, umpiring football and was elected sports captain in year 12. Olivia was a much loved daughter and sister who is now sadly missed. She is remembered by those who knew her as an extraordinary girl of courage and humility, whose smile could light up a room.
Olivia was 17 when diagnosed with an inoperable brain tumour. She endured 18 months of numerous rounds of chemotherapy and intensive radiotherapy. Olivia fought this insidious disease bravely and selflessly. Sadly Olivia passed away on the 8th of April 2014. Olivia and her family and friends have been actively raising money to find a cure for brain cancer. Only 6 weeks before Olivia passed away she led her team the ‘Carland Koala Clan’ in the relay for life at Aberfeldie. The team continued the relay and raised valuable funds over a period of 3 years.
Olivia’s family and friends continue to raise money and awareness for the RCD Foundation. In 2018 they held a cocktail party fundraiser and they will continue their fundraising events to support brain cancer research this year.

Jacob Walker

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In March 2014 Jacob Walker had surgery to remove a malignant Grade II astrocytoma glioma brain tumor. A mere six months later, he completed the 2014 New York City Marathon, raising money for brain cancer research.
A sports producer at McGuire Media in Melbourne, Jacob has a keen interest in sport and will work closely with the RCD Foundation on Connor’s Erg 2020.
He met his American wife, Kaitlynn through his recovery, they have a gorgeous son, Hudson. They’re now expecting their second child, a baby girl.
In early 2019, Jacob received the devastating news that his brain tumour had grown back. He will undergo his second brain surgery to once again remove the tumour.
Despite everything life has thrown at him, Jacob has taken his diagnosis in his stride and is passionate about campaigning for greater awareness, funding and research for brain cancer.

Kat Mattila

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Kat was 16 years old and just starting out her VCE studies when she was diagnosed with a pilocytic astrocytoma brain tumour. Due to the location, resection wasn’t an option, so after a brain biopsy, she underwent 12 months of chemotherapy. Fortunately, this type of brain cancer is low-grade and slow growing, Kat is now six years stable (recently with a confirmed positive scan). Despite the good outcome, the side effects of the tumour have not been easy to live with. Kat suffers from many neurological symptoms, such as fatigue, coordination issues, autonomic dysfunction, strength issues, and chronic pain. Kat came to learn about the RCD Foundation through our music therapy grant program, which she received after her treatment. Kat has proven to be a moving public speaker for our foundation and is dedicated to raising awareness, and supporting other young people as they face a life-altering diagnosis and journey.

Gideon Gratzer & Rebecca Goldstein

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In May 2018, 8 year old Gideon Gratzer was diagnosed with an aggressive GBM tumour. Gideon’s treatment involved surgery, radiotherapy and targeted chemotherapy treatment. During this time, Gideon’s family were privileged to spend extraordinary quality time with him.  Gideon was a gorgeous, funny and gentle boy, devoted to his siblings and family. He loved going to school, loved all things cookie-monster related and entertained everyone with his quirky sense of humour and fantastic memory. In May 2019, almost 12 months after diagnosis, Gideon died at age 9.

In September 2019, Gideon’s family and friends formed “Team Gideon” and competed in Connor’s Run with 40 members. Together with the support of the Spotlight Retail Group, they raised nearly $90,000 and topped the Corporate Ladder.  Gideon’s family are committed to supporting the Robert Connor Dawes Foundation by raising awareness and funds through participation in Connor’s Run.

We’re proud to announce that we’re funding the Gideon Gratzer PhD Scholarship, it will provide $30,000 per year for three years. Read more here

 

The Berry Family

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Rory Berry was diagnosed in May 2018 age 4 with a form of low grade gliomas called Disseminated Glioneuronal Tumors. It is an incurable and very rare condition which he underwent surgery for followed by 68 weeks of chemotherapy. His treatment finished in October 2019 – and whilst his many tumors remain – they are currently stable.

His family decided to raise money for research with the hope of finding answers to potentially help Rory and other children live a long and happy life. Rory’s oncologist Dr Jordan Hansford directed them to the RCD Foundation as being leaders in contributing to paediatric brain cancer research. His parents Gemma and Josh, along with Rory and big brother Hayden participated in the Great Ocean Road Running Festival in 2019 with a team of 18 runners, and subsequently entered another strong team for Connors Run – raising over $42,000 in the process.

They are very passionate in continuing to raise awareness of Paediatric Brain Cancer in their local Geelong and further reaching community. They have produced a range of clothing for “Rory’s Warriors” sharing the RCD logo which has proved to be very popular and facilitate fund raising in an ongoing manor. Rory has an incredible affable, cheeky and loveable personality that draws people in and encourages involvement and assistance. The family aim to continue participating in sporting events emblazoned with the “Rory’s Warriors and RCD” logos to broaden the public knowledge and raise funds for research.

Jean Mitchell

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Jean was diagnosed with medulloblastoma brain cancer in 2016. At the time she was a keen rower and had competed at the Henley Royal Regatta a few months prior, after being undefeated in Australia (in the schoolgirl quad) for two years.

Jean was excited to see where her rowing career would take her. But she started experiencing throbbing in the back of her head, and slowly more symptoms emerged such as loss of balance, blurred vision, vomiting and extreme dizziness (so bad she could barely get out of bed). The diagnosis process took many month (and many different doctors) until an MRI discovered the tumour in the back of her brain. Naturally this was a major shock to Jean and her friends and family.

A few days after the diagnosis she underwent surgery, performed by neurosurgeon Wirginia Maixner, where she was able to remove the entire tumour. The next steps of treatment included radiation and chemotherapy. Jean returned to rowing in the final stages of chemotherapy, but it soon became evident just how the treatment had taken a toll on her. Jean had to start from scratch to rebuild strength and fitness, that had once come so easily. It wasn’t until March 2020 when she finally got a PB on a 2km ergo test that she had set when she was 16. Jean has proved to be an inspiration to us all and we are excited to see what she gets up to next.

Jacinta and Georgia Maguire

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At four years of age Georgia was diagnosed with supratentorial ependymoma. Over a period of 18 months she endured three major brain surgeries, chemotherapy and radiotherapy and continues follow up care for the long-term effects from cancer treatment.

Like many kids, Georgia loves chocolate! Georgia also loves baking! Throughout her treatment Georgia was determined to live her best life despite the challenges before her. As a distraction and something to look forward to, Georgia and her mum Jacinta started “12 Months of Chocolate Baking”. Every month when Georgia felt well enough, she chose a recipe with chocolate and would bake it with Jacinta. This inspired a wonderful group of their family and friends to create “The Chocolate Monsters”. Over the last three years The Chocolate Monsters have raised almost $50,000 in support of paediatric cancer research and care. The Chocolate Monsters are committed to continuing to raise awareness and funds to support the RCD Foundation and to honour our brain cancer heroes.

The Brown Family

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Georgia was only 20 months old when she was diagnosed with an anaplastic ependymoma brain cancer. The following day after her diagnosis, she underwent emergency surgery. This surgery resulted in Georgia losing movement on her entire left side, and losing her swallow function resulting in her getting a temporary tracheostomy. Unfortunately other surgeries for recurrences have also caused left sided profound deafness and facial palsy, both which are permanent.

But Georgia continues to get stronger with her left side and balance everyday, taking it in her stride to live her best life. She loves playing with her sisters, painting, cooking, swimming, dancing and gymnastics, and is a happy, outgoing little girl. Georgia’s parents, Rachelle and Nathan and her sisters Rosie and Whitney have now grown used to seeing Georgia go in and out of hospital, something no family should have to go through. Despite everything they have been through, the Brown family are positive about the future, and committed to changing the odds for children with brain cancer.

Michael Arkalis

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In 2002, at just five years old, Michael Arkalis was diagnosed with pilocytic astrocytoma of the brain stem. Since then Michael has had a number of reoccurrence and undergone surgery numerous times, most recently in 2020. One side effect Michael has experienced is hydrocephalus (characterised by headaches, impaired vision and cognitive difficulties).

Despite everything he has been through, Michael remains positive and is supported by his friends and family.

In his spare time Michael keeps busy volunteering with the SES, St John Ambulance and studying nursing.  Michael is also a bit of a TikTok star, follow him @michaels.fight

Ken Fleming

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Ken, his wife Dianne, and their sons were happily living their lives in beautiful Tasmania when their world fell apart in July 2016. Their son Jack was diagnosed with a Glioblastoma Multiforme brain tumour, and they spent the next 22 months trying to reverse the irreversible. But sadly Jack died on 15th April 2018, he was just 21 years old.

Ken always thought when he retired he’d write a book. He never wanted to write it unless it had a happy ending, sadly this book did not, but he promised Jack he would do it. After three days of very painful reminisces and emotional depths only parents that have lost children can understand, a manuscript was created which Ken called ‘Jack’s story’.

Jack’s family have been working with doctors and medical researchers at NSW Health, the Royal Prince Alfred Hospital and the University of Sydney, to establish a National Centre for Brain Tumour Neuropathology – to be known as the Jack Fleming Centre.

Lukas Rosenbaum

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Lukas Rosenbaum was diagnosed with a medulloblastoma brain tumour in April 2012 at the age of 2 and a half. He underwent neurosurgery at the Royal Children’s Hospital in Melbourne, and was then put on a gruelling six month inpatient chemotherapy program to avoid radiation on his young brain. Unfortunately some of the tumour remained so Lukas  underwent 12 months of outpatient ‘maintenance’ chemotherapy to buy some time before commencing full brain and spine proton radiation in Texas, in October 2013, one day after his 4th birthday. Fortunately, Lukas has shown no evidence of disease since January 2014.

 

Lukas has sadly suffered bilateral high frequency hearing loss from chemotherapy, cataracts in both eyes from brain radiation and ongoing issues with his balance and coordination from tumour and treatment effects. He will suffer a minimum of 10cm height reduction in his spine from the radiation as well as likely further growth disruptions due to damage to his pituitary gland. Full brain radiation at such a tender age also caused changes to his processing skills, memory function and difficulty with social skills. Despite all this, Lukas remains a happy and positive boy who soldiers on.

 

Lukas has a keen eye for building design and loves to create structures in the game Minecraft. He is also a train lover and can identify the type of train that is approaching solely by its horn sound! He’s just started tennis lessons, and at home he enjoys playing with his cats Skittles and Hazel.

 

In 2021 Lukas took on the challenge of doing his first Connors Run, running/walking the 9.6km, with the support of his mum and dad. Their team, ‘Inspired By Lukas’ raised over $10,000,

Nic Cresp

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In September 2018, Nic played the role of narrator in his school production of Cinderella. He was hilarious, and performing on stage was one of his favourite pastimes. No more than a week later, exhausted and unstable on his feet, he was taken to RCH Emergency, and diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG).

Dr Jordan Hansford was the Oncologist on duty that day, and whilst they met in the worst of circumstances, Nic and his family will always be grateful to him. Immediately post Nic’s radiation, he began an immunotherapy clinical trial. They were given no guarantees, but at that stage, they were willing to try anything. Incredibly, Nic’s tumour shrunk and is now stable.

In 2022, Nic is now 3.5 years post-diagnosis. He faces life’s challenges head-on, and takes any opportunity offered to him. He enjoys playing tennis, and cooking up a feast, and will give any sport or activity a go, including completing his first Connor’s Run in 2021 with his family ‘Team Cresp’.

Nic has aspirations to work alongside his heroes – like Dr Jordan and his support team at the RCH – and hopes to one day find a way to prevent brain cancer, as well as cure it!

Coco Nicholson

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Coco was born in May 2001. Seemingly healthy and happy, at eight weeks old she became ill. Despite reassurance from various doctors that nothing was wrong, Coco’s mum Megan took her to the emergency department at The Royal Children’s Hospital (RCH). She watched Coco go from a thriving, smiley, happy baby, to just a shadow of herself within three short weeks.

The incredible staff at RCH recognised the seriousness of Coco’s situation and admitted her immediately. When Coco began to display some neurological symptoms, she was sent for a lumbar puncture and an MRI, and was eventually diagnosed with a brain tumour. She was operated on immediately by neurosurgeon Wirginia Maixner who was unable to remove the whole tumour as it was situated on her brain stem. Coco was eventually diagnosed with a Glioblastoma Multiforme and began chemotherapy as soon as she was able to. She endured several surgeries and treatments but succumbed to the disease on January 12th 2002 at the tender age of seven months.

Coco now has three younger siblings who are all in secondary school: Maisy, Sunday and Fletcher. Older sister Lili is now studying nursing at Monash.

Lili, her partner, Dylan and Megan registered for their first Connor’s run in 2021. They put the call out to family and friends who have been by their side the last 20 years, and were astounded by the incredible response not just by them, but strangers they have never met who were touched by Coco’s story, raising over $18,000. We hope it’s the first of many Connor’s Runs for TeamCoco!

Olivia Jones

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In 2011, at just five years of age, Olivia was diagnosed with a pilocytic astrocytoma in her brain and spinal cord. She underwent a laminectomy of the spine to remove as much of the tumour as possible, but due to the tumour being disseminated throughout her spine, much of it was too close to the spinal cord to remove safely. Olivia then underwent 12 months of chemotherapy, that held the tumour stable for four years, but unfortunately the spinal tumour started growing again in 2016. She underwent another 12 months of chemotherapy and things held steady for almost 5 years until August 2021 when it grew again, and very quickly she lost the use of her left leg.

Most recently, Olivia underwent six weeks of radiation at Peter Mac, as well as a high dose steroid treatment. Olivia’s family hope that this treatment is enough to keep the tumour stable forever.

Olivia is an absolute trooper throughout all her treatments and all of the obstacles that life throws her way. Even when the tumour stays stable, it impacts her daily life in many ways, causing problems such as concentration issues, learning delays, and many physical issues. She’s still working hard to get back to walking independently, with intensive physical therapy several times a week. Now that school is back, she is loving being back in the classroom! Olivia especially missed her friends, choir, singing lessons and rehearsing for the school production! Olivia’s other interests include watching her beloved Hawks play footy, Star Wars, going to the cinema, baking treats and hanging out with her enormous greyhound, Andy!

Olivia came to know about our Foundation after her second relapse, when she was offered music therapy sessions to help her deal with the chemo and physiotherapy that she needed. She has always loved to sing, and she likes to say that “when she sings, all her problems just fly away!” Olivia is once again having music therapy through RCDF as she fights her way through her rehabilitation. It’s always very hard for her to choose what to sing in her sessions! Will it be Disney, Taylor Swift, musical theatre, Ed Sheeran…..who knows!?

Olivia is involved in her first Connor’s Run this year, her team is “Olivia’s Superheroes” and she’s hoping many of her friends and family will join her in raising funds and awareness for children’s brain cancer. Her team will be in superhero gear and she will be dressed in a Spiderman costume, because she’s a huge Marvel fan.

Megan & Ryan

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Megan and Ryan’s love story began in February 2016. Their worlds were shaken when Ryan was diagnosed with a medulloblastoma brain tumour in July 2017. He underwent brain surgery, six weeks of radiation, and seven months of chemotherapy.
Ryan was officially cancer free in May of 2018. But during a routing MRI in August 2020, it was discovered that there were four tumours instead of one. Ryan is currently doing well, undergoing chemotherapy fortnightly at Peter Mac.
The couple enjoy going on adventures and travelling to new places. They also love kayaking. Ryan’s a big sports fan so they go to lots of AFL games (although Ryan is a Richmond fan and Megan barracks for Essendon!)
Megan and Ryan have been involved in Connor’s Run since 2020, fundraising as Team Ryan. Megan has also participated in Connor’s Yoga. Through fundraising and awareness, they are hopeful the odds for young people with brain cancer can greatly improve, to help other families like theirs.