Paediatric/AYA Cancer Researcher Dr Emmy Fleuren

Dr Emmy Fleuren is a research scientist specialising in paediatric/AYA sarcomas.

Emmy’s sarcoma-centred research journey started in the Netherlands at the Radboud UMC in 2010, over eleven years ago.   Since then, she has been undertaking paediatric and AYA sarcoma research across the globe at various world-class research institutions.  These include the Institute of Cancer Research (ICR) and Royal Marsden Hospital (RMH), London, UK, Monash University, Melbourne, and currently the Children’s Cancer Institute and the ZERO Childhood Cancer precision medicine program here in Sydney.

Cancer as a disease, has always fascinated Emmy.  “How is it, that at a given point in time, your body’s own cells start to act weirdly and grow uncontrollably? she questions.   It is very different from a viral or bacterial disease, where we know what is causing it, and the why and the how of cancer always piqued my curiosity.”

It is no secret Emmy loves what she does.

When asked why she explained, “We are doing experiments/analysing data on a daily basis that have the potential to ultimately change the outcome of a young patient with cancer. Because my studies are embedded within the ZERO Childhood Cancer Program, which is Australia’s, and arguably the world’s, most comprehensive precision medicine platform aimed to provide tailored treatment recommendations for individual childhood cancer patients, every result that we get can have an impact on a patient’s life. Being able to get meaningful results for a patient who needs our help right now is incredibly rewarding, and I feel so privileged to be part of a program that is able to do just that.”

Emmy has been driven by the numbers of young sarcoma patients she met whilst undertaking her PhD research in the Netherlands, which has placed a very personal edge on everything she does.

“They all shared the same frustration”, said Emmy: “Why am I still treated with a protocol from the nineties?”  Emmy has seen first- hand the detrimental effects these treatments can have on young patients, yet these treatments still were not enough to cure all of them. That left a lasting impression, and that is when I decided to go all-in on sarcoma research.

So how does this talented researcher, and mother of one see as the key to ongoing success?  In addition to securing the critical funds needed to make research possible, we need to attract and retain the brightest young researchers, and to have them get them as enthusiastic about sarcoma research as Emmy is.

“We can only go far if we go together!” said Emmy.

The ZERO Childhood Cancer Program, which is Australia’s, and arguably the world’s, most comprehensive precision medicine platform aims to provide tailored treatment recommendations for individual childhood cancer patients. In addition to including whole genome and whole transcriptome molecular profiling, the programme is now  looking at methylation profiles.  It has an incredibly successful and dedicated ‘Preclinical Drug Testing Core’ (PDTC). In the PDTC, the patient’s own tumour cells are grown the laboratory and in mouse avatar models, to test a wide range of clinically applicable drugs. A number of drugs have already been identified and ‘hits’ that were not predicted by the molecular profiling revealed, underlining the importance of these assays.

“Not many childhood cancer patients in the world have the opportunity to enrol in such a comprehensive program, particularly not patients suffering from rare diseases like sarcoma. This program has been a major determining factor for me deciding to make the move to Australia with my family in 2019, including our son who was ten months old at the time” said Emmy.

Closely linked to this program, my research is centred on building novel pipelines to be able to give targeted treatment recommendations to even more patients. Thanks to the Cooper Rice-Brading Foundation and The Kids’ Cancer Project, we will be able to perform a completely novel line of investigation, phosphoproteomics (looking at targets that are actually “switched on” and driving the cancer), while the program expands to ultimately include childhood cancer patients of all stages of their disease (from diagnosis, to relapse, to metastasis). This gives the team at Zero, CCIA a truly unique opportunity to screen for the presence of activated targets at different moments in time, which is incredibly exciting. One question Emmy in particular would like answered is, “can we start using novel, targeted therapies directed against activated targets earlier in the disease (for example at diagnosis), sparing these patients the side-effects of toxic chemotherapies and invasive surgeries?”

What really excites Emmy is that tangible progress is being made for sarcoma patients, in real time. The sarcoma research that she performed prior to her move to Australia was more laboratory-based, using sarcoma patient cell line models that have been around for a while, and any result found would not benefit that particular patient anymore. The next step for those studies has always been facilitating a clinical translation of results; bringing our laboratory findings to the actual patients.

Working within ZERO is completely different for Emmy. Every discovery made, has the potential to have an actual clinical impact for that patient. This type of research in “real-time” is what Emmy always wanted to do, and in Australia within this innovative research at the ZERO Childhood Cancer Program she can do just that. Precision medicine programs elsewhere in the world are also not as comprehensive as ZERO, who have the best chance of identifying a more specific, less toxic treatment for a sarcoma patient, by not only looking at the molecular profile of their tumour, but also performing state-of-the-art drug-screens on the patient’s own cell grown in our lab, and establishing unique mouse avatar models for the patient. It really is an amazing opportunity for young sarcoma patients in Australia, as no-one else in the world has access to such a diverse screening platform.

Emmy is working with a cohort of paediatric/AYA sarcoma specialists in Australia to fulfil hopes for the future of sarcoma which are:

    • Having ZERO more easily accessible to all childhood/AYA sarcoma patients, including those treated in adult centres.
    • From our own research: identified new, activated targets that can be switched off with specific, non-toxic drugs for patients that are currently missing out.
    • To have integrated my sarcoma research lines (including looking at activated targets and unexpected preclinical drug responders) to the mainstream ZERO program, and thereby increasing the number of patients receiving a targeted therapy recommendation.

What would Emmy’s greatest wish as a researcher be for the future of young cancer patients in Australia?

“That we will be able to make childhood cancer a curable disease for every type of childhood cancer, using drugs that are not only more effective, but also less toxic.”

CRBF together with The Kids Cancer Project  are delighted to support Emmy’s work and that of her remarkable team, within the Phosphoproteomic sarcoma specific trial under the auspices of the Zero Children’s Cancer Programme.

Father’s Day – 2021

“Don’t forget to pick up a bottle of wine for dad for Father’s Day. After all, you are the reason he drinks…”

Father’s Day is a time when we turn our thoughts to dads, and those who fill that role for many of us.

From all at CRBF, we wish you love, strength, peace of mind, and a day to reflect upon beautiful memories, and a chance to make many more.

It is also a time we pause to remember those who no longer have their child to walk beside them, and those that no longer have their Dad to hold their hand. Each of these individuals holds a special place in our hearts.

#curesarcoma
#notgivingin
#missingyoucoops
#fathersday2021

Meet the remarkable Brendon Onorato

Meet the remarkable Brendon Onorato.

Brendon Onorato is the father of two boys, married to the love of his life, Luisa, and has an enormous love for his parents and twin brother.  In Brendon April of 2015, Brendon was diagnosed with myxoid liposarcoma

Brendon first noticed a lump on his thigh which was getting larger. After visiting a GP on 2nd of March 2015 and undergoing an ultrasound and MRI scan, Brendon learned that a mass in between the skin and fatty tissue had been discovered. A referral to a specialist on 24 March 2015, confirmed it was a tumour that would have to be removed with surgery.

Brendon was admitted for surgery on 1st April 2015, at the Royal Prince Alfred hospital.   Surgery lasted for just over two-and-a-half-hours with the surgeon removing the 10cm tumour.  Spending the next three days in hospital Brendon was then forced to wait 18 days for the pathology to confirm a diagnosis of  a myxoid liposarcoma, a rare type of soft-tissue cancer that occurs in approximately one in 100,000 people.

After further MRI and CT scans, Brendon was referred to an oncologist to commence radiation treatment starting on 1st  June 2015.

The 11th  September 2015 was one of the most important days for Bendon and his family, receiving the all-clear post-surgery and treatment.

Brendon underwent a PET and CT scan every three months for a two year period to monitor reoccurrence, and recently after being cancer free for six years, Brendon and his family were given the devastating news that his cancer had returned.

Brendon has devoted his time over many years to raising awareness of cancer symptoms in men in particular, who often ignore their health, and subsequently what could be very important early symptoms.

This is a man who has devoted so much to the community over the time he was cancer free, and now it is his turn while he fights yet another savage battle with myxoid liposarcoma.

To assist the family a Go Fund Me page has been set up by a very dear and close family friend, Stephanie Pletikosa.

With Father’s Day two days away, we would ask you to consider donating as little or as much as you can, to provide some relief to this young family, of the ongoing day to day costs of living, and more importantly, to allow them to focus on Brendon, and his treatment and recovery.

Please press on the link below:

https://www.gofundme.com/f/help-grazing-co-family-during-brendons-treatments

Cooper Rice-Brading – 22-01-1999 -24-08-2021

22 January 1999 – 24 August 2017

Always and forever. 

“I think we dream so we don’t have to be apart for so long. If we’re in each other’s dreams, we can be together all the time.”

We would ask you today to honour Cooper’s memory by simply doing something for someone else. It doesn’t need to be grand, but something meaningful to lift the spirits of those around us.

In these very unsettled times, so many are hurting, and a simple act of kindness can make a world of difference.  

Coops showed us true strength in the face of adversity, and this made the world of difference to those around him, and continues to do so with the legacy he leaves behind.

First Nations Cultural Capability


We are delighted to welcome Kylie Tarleton to the CRBF team as Director – First Nations Cultural Cultural Capability..

Kylie is a proud Wiradjuri Woman from Orange in the Central West of NSW, who wears many hats .  Devoted wife, mother of two boys, one of her boys Cooper is a osteosarcoma survivor. Kylie spends her professional life Leading Aboriginal Education Strategy at TAFENSW and Kylie is also a renowned Aboriginal Aboriginal Artist. 

Kylie has agreed to oversee this fast growing and extremely important area within CRBF, to ensure we are delivering the best possible support and advocacy for our First Nations patients. 

If you or anyone you know could benefit from this service, please contact CRBF directly https://www.crbf.org.au/contact/

or by telephone 0412239020.

Let’s talk “more” about sarcoma


Take 45 minutes out of your day to put your EarPods in, and listen to our latest Podcast, Let’s Talk More About Sarcoma, a collaboration between Sock it to sarcoma! and CRBF.

It may save your life or that of someone that you love.

In this episode we are delighted to have Dr Richard Boyle, eminent sarcoma surgeon, & the Head of NSW Bone & Soft Tissue Sarcoma Unit at RPAH, Dr Michela Sorensen, Dr Michela Sorensen, Medical Practitioner who has not only seen sarcoma in her practice, but has also suffered the unspeakable loss of a family member, and finally Merryn Aldridge, who worked as a physiotherapist for the Australian Athletic Team at the 2014 Commonwealth Games, and once again has encountered sarcoma through her practice. This highly credentialed trio speak about the importance of symptom recognition, your rights as a patient, and the importance of timely referral to a sarcoma specialist.

An enormous thank you to Cathrine Mahoney & Darcy Milne, the stellar team behind this podcast series for the second season. Suffice to say without their professionalism and willingness to assist us with this very important project, this production would not be possible.

To listen, please press on the link below:

https://podcasts.apple.com/au/podcast/lets-talk-more-about-sarcoma/id1521584488?i=1000527963130

Zero Children’s Cancer research grant


To mark the commencement of Global Sarcoma Awareness Month, it is our great pleasure to announce the “Wipfli Family Sarcoma Research Grant”, a $186,799 grant, made possible by the family’s incredible efforts throughout Celebrity Apprentice Australia.  But it doesn’t end there – joining with us is The Kids Cancer Project who have stepped in and doubled the grant.

All in all, $373,597 will be heading towards sarcoma specific research under the auspices of  the Children’s Cancer Institute of Australia  and the Zero Childhood Cancer Phosphoproteomic Study!

The study will be led by Dr Emmy Fleuren, the sarcoma research lead in the Translational Tumour Biology Group at the CCIA. Emmy is leading the way in the paediatric and adolescent space in Australia, and the future of sarcoma is all the better from having her expertise.

We need not remind you of the efforts of Wippa and Lisa to facilitate the money raised throughout Celebrity Apprentice.  They are an incredibly special family, and their efforts to grow Cooper’s legacy is inspirational.

The Kids Cancer Project, with a special mention to CEO Owen Finegan, have supported high level paediatric, adolescent and young adult cancer research in Australia for almost three decades.  Their commitment to funding research projects for all childhood cancers is as humbling as it is life-changing for those young patients who stand to benefit.

We extend our deepest gratitude to each of these outstanding contributors to sarcoma research in Australia.

Head to the Children’s Cancer Institute social media accounts to read more about the research!

July Sarcoma Awareness Month

What is the need for Sarcoma Awareness Month? 

Sarcoma is still considered to be the forgotten/neglected cancer, despite the AIHW predicting again in 2021 it would be the leading cause of cancer related death in the 10-24 year age group in Australia.

Efforts to fund research and drug development for sarcoma are more challenging due to a lack of awareness and understanding. It is difficult to raise funds for research if the community don’t know the nature of the cancer, or even worse, they have never even heard of it. 

During the 2021 Global Sarcoma Awareness Month, we aim to further highlight:
⁃ The critical need for early diagnosis,
⁃ Symptoms and ‘red flags’ to be aware of,
⁃ When you should see your medical professional, 
⁃ Your rights as a patient, and 
⁃ The need for timely referral to a specialist clinician/team.

It is also a month when we acknowledge those patients living with a sarcoma diagnosis and ongoing treatment, and those who have completed treatment and resumed their lives. And of course, remember those who tragically lost their lives to this insidious cancer.

We team once again with our colleagues from across the Nullabor, @sockittosarcoma to produce the national awareness campaign, which will include a powerful video, and our podcast season 2 – Let’s Talk More About Sarcoma.

We’d like to thank patients Mika, Margaret, Celso and Jack, along with experts Dr Antoinette Anazodo and Sarcoma Nurse Katie Thomson, for helping to create this moving yet informative piece.

We wish to thank the amazing team @by_enthral – in particular Jordan Laing & Emma Robertson for their creative direction, and for donating their time and all agency costs involved for the video. This meaningful production would not have been possible without their generosity. 

We also extend our gratitude to @cathrinemahoney and @darcymilneee for their outstanding work once more on the podcast for the second year running.

Help us this July, in spreading awareness about sarcoma, to help end the needless loss of lives. 

Unmet needs for patient support in rare cancers

Christine Cockburn, Patient Care Co-ordinator with Rare Cancers Australia shares her vast experience on addressing the unmet needs of those who live with a rare cancer. She will be joined by ANZSA Consumer Advisory Panel member Karen Laurati, who knows this road well, having been diagnosed with sarcoma, undergone treatment, and now enters survivorship, and a very new phase of her life.

Christine leverage her vast experience with a broad cross section of rare cancers, to provide compelling insight into an area that has the propensity to be overlooked, from treatment and throughout diagnosis. This will be balanced by Karen’s invaluable patient perspective, having lived the nightmare of a sarcoma diagnosis.

If you are a patient diagnosed with a rare cancer, in particular sarcoma, or a carer/family member, this webinar will be an extremely useful tool in finding additional resources which may potentially assist you.

Use the QR code below to register or press on the link below to go directly to the ANZSA website. https://www.facebook.com/ANZSarcoma/

When thank you is never enough…

Wippa and his beautiful wife Lisa, sons Ted and Jack with sister Francesca

Australian media heavywieght and Nova radio host Michael “Wippa” Wipfli and highly accomplished media public relations executive Cathrine Mahoney came into Cooper’s life at a time when he was not keen on letting the outside world in.

He had very little time for anyone outside his inner sanctum of precious few people beyond immediate family.

Cooper’s condition had been deteriorating swiftly and savagely, and the outside world, even those closest to him throughout his brief life, were shut out. He did this to protect his friends. He wanted their memories of him to be positive, and not what he had become at the hands of sarcoma.

The exception to the rule were ‘Cath’ and ‘Wippa.’ Both very quickly became part of Cooper’s circle of trust and an extension of family.

Coop had a strong nose for genuine people and throughout the 18months from diagnosis to treatment, he ran his own race. He did not want to become the “boy with cancer” that elicited pity, he was hellbent on being the survivor, so becoming a token cancer patient for someone else’s personal gain, was never on the cards. He had avoided those who sought his company for pity, causing offence to some, but always sticking to his moral compass. He learned very early in the piece – Cath and Wippa were the real deal.

Both made Cooper laugh and times spent with them individually or together, were highpoints for Coops. Quality time spent with him away from cameras and media, resulted in a surprisingly strong bond and swift bond forming between the three. Unique as it was special. Each brought unbridled joy to his life when little else could.

Unsurprisingly, Cath and Wippa’s lives were impacted greatly with the news of Cooper’s passing, and from where our family stood, we couldn’t have blamed them for closing the door, and moving on. But neither chose to.

Instead, both continued with unwavering love and support for our family, at a time when we were at our lowest ebb. As a special aside, it wasn’t long before their respective families also became part of our lives, extending that very special bond, and providing enormous comfort through a myriad of highs and lows.

As we fast approach four years without Coop, Cath, Wippa and their families remain firmly by our sides. These remarkable friends continue to step up and do what they can to preserve Cooper’s legacy.

We have called on Cath and Wippa so often to assist with various projects along the way, and never once have they faltered.

Last year, both participated in the ground-breaking podcast series “Lets talk about sarcoma”, incepted and produced by Cath, giving up hours of their time and expertise to craft a finished product that resulted in a global distribution, and a meaningful tool for patients and families. Neither would accept payment in any form. Yet another labour of love, but one that held so much gravity.

Only two weeks ago, Cath and the highly talented Sarah McGilvray, who appears side by side with Wippa on the highly rating Fitzy and Wippa breakfast show, together with her role as co-creator of the very successful Nova production, “Not another parenting podcast’ performed for our guests at the annual CRBF Mother’s Day Breakfast, braving the Covid issues at the time, delivering a flawless and hysterical segment on parenting.

Which brings us to the announcement tonight.

Late last year, an unexpected call from Wippa advised us, albeit confidentially, he was going to take the Foundation with him onto the forthcoming Celebrity Apprentice Australia as his charity of choice. We were simply lost for words, and deeply humbled. We are a relatively new charity (4 years registered) and despite the high-profile charities Wippa could have chosen, he opted to choose the Cooper Rice-Brading Foundation, providing us with the opportunity of a life-time.

Filming for the Celebrity Apprentice Australia was incredibly rigorous over six days, and Wippa continued to burn the candle at both ends while filming took place, continuing is turning up each morning for a 6am start on his highly successful breakfast show, whilst also creating pilots for his production company.

This unspeakably difficult schedule did not only impact Wippa, but his wife Lisa, who was unwavering in her support. So many sacrifices were made by this family over the many weeks of filming, and for this reason, it is nigh on impossible to express our gratitude to Lisa, who at the time found herself juggling two children under the age of 5 and a new baby.

Tonight we have all watched on as Wippa’s dedication to advancing sarcoma, his bloody mindedness to ensure a win at all costs attitude, and never ending perpetuation of his very special friendship with Cooper, resulting in a win of enormous proportions. Funds that will make a quantifiable difference in the lives of the patients who are currently living without further treatment options.

We are thoroughly delighted to announce, Wippa’s outstanding efforts will be directed to supporting patients and families living with a sarcoma diagnosis, and toward the funding of a pivotal paediatric phosphoporteomic sarcoma specific clinical study through the Zero Children’s Cancer Programme, which will be named the Wipfli Family Sarcoma Research Grant.  This funding will support the Sarcoma Research Laboratory of Dr. Emmy Fleuren at Children’s Cancer Institute. Funds will be allocated to identify activated (phosphorylated) targets in sarcoma patients not covered in any other project, and will build the laboratory evidence needed to ultimately transform research findings and clinical recommendations.

It is impossible to articulate our thanks to Wippa, his beautiful family, for an opportunity which is rarely granted to a charity in its formative phases. This funding will provide the very real possibility of saving young lives, and will start a much needed conversation about sarcoma.

How blessed are we that Cooper left us the gift of friendship with his two special friends and their extended families?

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