A truly memorable event this morning at the unveiling of the Sony Foundation You Can Centre at Chris O’Brien Lifehouse
This state of the art centre will provide first class apartment style accommodation at no cost for families of the 15-25 year olds (Adolescent Young Adults AYA’s) living with a cancer diagnosis, who are forced to travel to facilitate treatment.
It is estimated upwards of 25% of this group will be sarcoma patients.
The omnipresent and commanding image of Chris O’Brien watched over proceedings which began with the poignant and magnificently chosen words of Gail O’Brien AM, followed by a flawless speech by Sony Foundation CEO, Sophie Ryan; the Premier of NSW Dominic Perrottet and the Hon Brad Hazzard both spoke without hint of an impending election, but instead from the heart; while host Peter Overton, forever the consummate professional, shared his deeply personal connection with this critical project.
The star of the event however was nineteen year old osteosarcoma survivor Elliot Prasad who delivered the heartfelt words that could only come from those who have walked this road. Elliot held the room in the palm of his hand – sharing his experience whilst undergoing treatment at Chris O’Brien Lifehouse and articulating the importance of the You Can Centre to those walking this road behind him.
Our heartiest congratulations to all involved.
An enormous step forward for those young people living with a cancer diagnosis.
An emotional yet uplifting morning at @garvaninstitute as @angustaylormp together with @greghuntmp (not present due to another commitment), announced a joint funding agreement of $185.4min for the ground-breaking vision of Professor David Thomas and the stellar team at @garvaninstitute to facilitate the Precision Oncology Screening Platform enabling Clinical Trials (PrOSPeCT).
It is difficult not to be emotional when you stop to consider the gravity and breadth of this programme, and what it will mean to those patients living with cancer in Australia, and in particular, rare cancers such as sarcomas. Sarcoma patients live with the uncertainty of a ‘heterogenous’ cancer (prone to constant change), and genomic screening for genetic mutations, and the discovery of therapeutic matches (personalised therapeutics) is a critical component of working toward a cure.
Speakers included the Garvan Institute’s Mara-Jean Tilley who managed to do the impossible by putting a very polished press conference together in less than 24 hours, the ever humble Professor David Thomas, The Honourable Angus Taylor MP, Minister for Minister for Industry, Energy and Emissions Reduction, Mr Stuart Knight, General Manager Roche, Dr Tony Penna representing NSW Health, Andrew Hagger CEO, Minderoo, Richard Vines CEO of Rare Cancers Australia and Omico Chair, Paul Jeans. Each of the speakers spoke with deep passion about the programme, and the inherent difference it would make to those who need it most.
Some of the many aims of this programme are to provide both paediatric and adult patients increased access to genomic screening, (an additional 20,000 patients), repurposed drugs and immunotherapies, to empower Australian clinical trials innovation and capacity building, and to drive pharmaceutical and biotech engagement, establishing Australia as a world leader in this space.
By expanding the current programme to accommodate 20,000 additional patients, will provide untold hope to those who will over the coming months and years, be diagnosed with cancer.
The NSW @nswhealth and Federal Government(s) @healthgovau @industrygovau are to be acknowledged and thanked for their support of this programme, @childrenscancerinstitute for their contribution to the very important paediatric and AYA component, together with @roche and philanthropic partners @minderoofoundation @rarecancers
Congratulations to Nathan Lyon for an outstanding 400th Test wicket over the weekend!
Nathan and his has manager, Peter Lovitt, Director of the Driver Avenue Group have been loyal supporters of CRBF and the advancement of sarcoma. Both Nathan and Peter went that extra mile on a personal level for Cooper after his diagnosis with osteosarcoma, bringing joy in an otherwise very dark period of his life.
Coincidentally, Nathan has once again gone out of his way to provide a money can’t buy opportunity, to host a 10 person bowling clinic, with proceeds raised going directly to sarcoma research and patient support in Australia.
This opportunity Nathan is providing forms just part of an incredible array of prizes on offer through the Afternoon Sports Podcast Auction, where 100% of funds raised will will contribute to the Sarcoma Navigation Telephone Support Line – a critical service which will provide a free of charge additional layer of clinical assistance for patients and families in Australia.
Nathan teams with league legend and all around round good guy Benji Marshall who is offering his company for 18 holes on the golf course.
A signed rugby jersey donated by the family of Wallabies Captain Michael Hooper is also available, along with a portrait of Latrell Mitchell, painted by Cooper Tarleton an osteosarcoma survivor and indigenous artist.
Finally, a signed 2019 Ashes cricket bat donated by Todd Greenberg at Cricket Australia and a 2021 signed NSW State of Origin jersey thanks to the NSW Blues.
This auction has now commenced and will close Christmas Eve, making these items the perfect Christmas gifts for someone special!
Enormous thanks to Craig Coleman and Blair Crawford, Tim Gilbert, Shane Lee, and all at the Afternoon Sport Podcast for their hard work in bringing this together in memory of Celso Munoz, who lost his life to osteosarcoma in October.
December 1, 2021. Botanic House, Royal Botanic Gardens Sydney
Not even the Omicron strain of Covid could eventually stop the “Collaboration: The key to unlocking advancements in sarcoma” breakfast from finally going ahead. After three false starts, spanning five months, 130 invited guests enjoyed a superb breakfast in the serene and picturesque surrounds of Botanic House, in the Royal Botanic Gardens Sydney. This event was a collaboration between Sock it to Sarcoma! WA and the Cooper Rice-Brading Foundation and was proudly supported by the Weinert family and the Weinert Group of Companies.
The morning began with an unusually balmy 22 degree Sydney morning, with sunshine streaming through the trees and shrubbery, encasing Botanic House. Guests arrived on time and in time to be seated and enjoy a sumptuous breakfast provided by the Trippas White Group. We would like to acknowledge Allyson Wert, from the TWG, who oversaw the smooth running of the event, and was a delight to work in the months leading up to the breakfast.
The MC for the morning was Mitchell Rice-Brading, older brother of Cooper, and the consensus is, he did an outstanding job in his new role. Mitch introduced Mandy Basson, Executive Director of SitS! who has worked tirelessly to advance sarcoma in Australia for over a decade, together with CRBF Chairman, Robert Beech- Jones. who spoke about the value of working together to advance sarcoma in Australia.
Professor Dorothy Keefe
The next speaker was Professor Dorothy Keefe, CEO of Cancer Australia, who was unable to attend the event due to a prior commitment with the Federal Minister for Health, however she took the time to record an inspiring message which resonated deeply with the audience.
Dr Cleola Anderiesz, Deputy CEO Cancer Australia
Dr Cleola Anderiesz, Deputy CEO of Cancer Australia, kindly stepped in for Professor Keefe, and held the room in the palm of her hand for the entire of her speech, her words echoing the theme of the breakfast, confirming the importance of working together to advance sarcoma.
Vale Celso Munoz
The mood of the breakfast then turned to a very sombre tone, as we each honoured the memory of Celso Munoz, who was to speak at the scheduled July event. Celso had prepared his speech, which his wife Dr Mariana Sousa had found after he passed away on October 27th, from osteosarcoma. Mariana felt Celso’s words should be heard, and they were read to our guests, and accompanied by a photographic tribute which can be viewed below.
Highly experienced and extremely personable media personality, performer and author, Gretel Killeen then took the stage to facilitate the research forum. Gretel was simply outstanding in her role, and due to ongoing AV issues with our link to Western Australia, her professionalism and experience was tested to the limit, however she remained poised and in complete control throughout. Gretel led the panel with Sock it to Sarcoma’s Dr Simon Carroll from WA, Dr Vivek Bhadri, Chris O’Brien Lifehouse, ANZSA Board member, Associate Professor David Gyorki, Peter McCallum Cancer Centre, Professor Michelle Haber AM , CCIA, Professor Glenn Marshall AM, SCH & CCIA, Professor David Thomas, GIMR & Omico, through 40 entertaining and informative minutes, with the panel sharing their innovative work and their hopes for the future of sarcoma.
It was then time for CRBF patient advocate Jack Gibson to take the stage, and to deliver such inspiring and heartfelt words, underpinning the importance and significance of hope, and providing deep insight into the past four years since his diagnosis. You could literally hear a pin drop, as Jack spoke from the heart, and courageously recounted his innermost thoughts on the the role hope plays at various intervals from diagnosis and beyond, not only for him, but for all sarcoma patients.
A tribute to Fergus McCulla
A tribute to Fergus McCulla followed. Fergus was and is a much loved member of the CRBF community, who lost his life to sarcoma in August of 2021. We were honoured to have Fergus’ family Jane, Norman and Anna, join us on the morning, and for them to be present for the launch of the Fergus McCulla Psychological Support and Wellbeing programme. Fergus was a keen and talented musician and an original song he penned and sang, was used as the basis for a photographic tribute, which you can listen to by clicking the link below.
The Fergus McCulla Psychological Support and Wellbeing Programme
Clinical Psychologist, Louise Hird, together with Psychiatrist Dr Lahvinya Kulaendra, created and incepted the psychological support programme, which will provide fully supervised emotional support, free of charge to all sarcoma patients and families nationally. Louise provided a polished overview of the programme and its purpose for our guests, thanking our graduate volunteers, Nathan Salgo, Henry Foley, Merran Cunningham, and Mitchell Rice-Brading, together with our legal team, Ross McLean and Michael Furlong for the many hours placed into the ensuring all legal requirements were met prior to its launch.
The Wipfli Family Sarcoma Research Grant
Media personality Michael “Wippa”. Wipfli, provided a lighter segment, speaking about his time on Celebrity Apprentice, and what the experience meant to him personally. Wippa on behalf of his beautiful wife Lisa, also attending the breakfast, presented a cheque to Dr Emmy Fleuren for $183,000 which represented his outstanding challenge win on Celebrity Apprentice Australia. He also presented a cheque to Molly Croft and Australian netball star, Amy Parmenter for the Tie Dye Project to aid paediatric/AYA sarcoma research in Australia.
Mr Andrew Hagger, CEO Minderoo and the Minderoo Foundation
Sock it to Sarcoma and the Cooper Rice-Brading Foundation were very excited at the prospect of having Minderoo CEO, Andrew Hagger, present to our guests on the morning. The universe did manage to throw a number of significant curved balls our way, including WA border closures, which saw Andrew willingly offer to deliver his very important words via livestream.
The gods of AV had other ideas and the instability of the live stream connection due to the current weather conditions continent wide, saw the line drop out consistently. Andrew, as a highly seasoned professional had the foresight to record his speech, however nothing it appeared was going to go well in this segment, and the taped message was not played at the event. This was so terribly disappointing not only to the two hosting organisations, but to the numerous people attending the breakfast, who had wanted to hear Andrew speak.
We wish to also recognise the time and expertise Bruce Mansfield from the Minderoo Foundation, has invested in assisting CRBF, in building strategies around his vast experience with the Brain Cancer Mission. This invaluable advice led to the joint submission with SitS! and the National Sarcoma Initiative.
We would like to extend our heartfelt thanks to Andrew Hagger and Bruce Mansfield for their high level support, and their willingness to assist both organisations in advancing sarcoma in Australia.
Our thanks to those who have made significant contributions to sarcoma in Australia
An important segment on the morning highlighted a number of significant contributions to sarcoma research over past years, including the Dr Matthew Fisher Research Fund which amassed in excess of $90,000 and was to be presented to Professor David Thomas at the scheduled July event, by Dr Fisher’s wife, Naomi Chun and his daughters, Sylvie and Vivian. Dr Fisher lost his life to rhabdomyosarcoma in January of 2021, after a relatively brief but very courageous battle with this savage sarcoma sub-type. As with each of us in the room on Wednesday, Dr Fisher and his family were and are very passionate about funding research for an eventual cure.
We also wish to mention the Wipfli Family Sarcoma Research Grant, the Daniel Allchin Race for a Cure, conducted by the Allchin family, the Fell Foundation, Running for Tom, in memory of Tom Hardyman, Vince’s Sprint for Sarcoma, The Alex Williams Memorial Fund donated by the Williams family, Dr Mariana Sousa, daughter Mia and the Salesforce team in honour of Celso Munoz, The McCulla Family in memory of Fergus Mculla, and the Weinert family & the Weinert Group of Companies. We also wish to acknowledge not only those in the room – far too numerous to mention, who have contributed enormously over past years, but also the Australian public, who have embraced this cancer, despite very few ever being personally affected.
Special thanks
Special thanks to Tom Molloy who undertook photography for the event, providing us all with some very special memories. Also to Martin Rossleigh, Siobhan Shaw, Di Lawrance and Emma Duncan for their ongoing assistance on the morning.
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.
“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.
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.
“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.
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.
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.
