Month: September 2021

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:

1. • 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.

“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.

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 2^nd 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 1^st 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 1^st  June 2015.

The 11^th  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