“Children and mothers never truly part. They’re bound in the beating of each other’s heart.”
Sending our love on Mothers Day to all those who are mums, those who fill the gaps when mum is not there, and those who face the sadness of being separated from their children or their mums.
Remember you are never alone.
We awoke to the tragic news early last Friday, that this courageous young man loved by all, had lost his life to osteosarcoma, and the sun immediately disappeared behind a cloud.
The courage and determination Jye showed throughout what can only be described as an intensely cruel treatment process, defies words. Those closest to Jye today remembered the kind, sweet, considerate, selfless young man whose smile, despite his plight in life, continued to light up a room.
Jye always put the needs of others first, despite the pain and sheer angst that came his way during treatment.
Jye made his mark on the world in such a significant way, and he will always be etched in the memory of those whose lives have been deeply touched by his special presence.
Jye’s family Lisa, Dean, Tristan and Byron left Jye in no doubt as to how much he was loved. It is difficult to imagine a family more cohesive, attentive and supportive. Jye was always wrapped in the pure love of this remarkable family.
Sometimes there are simply no words other than to send our love, strength and our heartfelt condolences to Lisa, Dean, Tristan, Byron, Jye’s extended family and his very special group of young friends who have spent the past week contemplating life without him.
Forever young…
Throughout the 13 weeks that lapsed from recurrence of the cancer in November, to his passing, Kienan showed extraordinary selflessness. At a time when he could be forgiven for shutting the world out, he brought the outside world in, by speaking publicly about his diagnosis, and his very uncertain future. This took extreme bravery at a time of unthinkable vulnerability.
Kienan’s positivity never waned, despite the hand of cards he had been dealt. In fact, through the angst and the heartache, he was determined to be heard, and to tell his story in an effort to help others. He took every opportunity to start the conversation about sarcoma, and to highlight the importance of never ignoring pain and changes in the body, or unexplained lumps and bumps. He did so with courage, resilience and positivity, often during his darkest moments. When we recently asked what we could do to make his life better, he wrote ” I’m fine – I don’t need anything. Awareness of this cancer. That’s all I care about”. Kienan continued to put others first with the unwavering love and support of his family.
We send our love and strength in abundance to Nicole, David, Cassel and Olivia, together with Kienan’s friends, as they contemplate their first days without him.
“Some people come into our lives and leave footprints on our hearts and we are never ever the same.” Flavia Weedn
We ask each one of you who reads this post to honour Kienan’s memory by not ignoring symptoms which could be potentially life saving.
To read more about common symptoms of sarcoma and to share some special memories of this very extraordinary young man please press on the link below
Recognising the remarkable achievements of the outstanding women who contribute so much to advancing sarcoma, whether it be in science, medicine, allied health, a patient, parent, carer, family member, volunteer or philanthropist..
Far too many to include by image and name today.
In so many ways you each help to make the world go round for so many living with a sarcoma 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
As a collective our voices are strong.
We congratulate the stellar team at the Daniel Ferguson LGMD Foundation, launched today, the first organisation of its type in Australia to focus on Limb-Girdle Muscular Dystrophy in its pursuit of improving outcomes for those diagnosed.
The Cooper Rice-Brading Foundation is delighted to be joining with The Kids Cancer Project once again, to provide funding support for a new international clinical trial for patients diagnosed with Ewing sarcoma that will be available soon to patients in Australia and New Zealand.
CRBF and TKCP join with the Federal Government Medical Research Futures Fund through Canteen and
ANZCHOG, and the GPA Andrew Ursini Charitable Fund providing philanthropic support to ANZSA.
In a recent press release, CEO of The Kids Cancer Project, Owen Finegan said “The Kids’ Cancer Project and the Cooper Rice-Brading Foundation are proud to be providing funding for this exciting international clinical trial, which will help children across Australia and beyond benefit from access to new treatment strategies.”
Ewing sarcoma is a rare and highly aggressive tumour that forms in bone or soft tissue, which can affect all age groups, but hits our young (paediatrics, adolescents and young adults) disproportionately hard. Survival rates for localised disease currently sit between 65% – 75%, however for those patients with advanced disease, survival rates plummet as low as 25%.
INTER-EWING-1 is an international clinical trial that examines several new treatment strategies for Ewing sarcoma patients, including access to a novel agent (a tyrosine kinase inhibitor), optimising radiotherapy doses and adding “maintenance” chemotherapy at the end of other planned treatments for patients of all ages.
This study will involve an internationally renowned team of sarcoma researchers led by Bone Cancer Research Trust Trustee and world-renowned Consultant Paediatric Oncologist, Professor Bernadette Brennan and will be conducted throughout Europe, the United Kingdom, Israel and Australia, where Australian researchers have contributed to development of the trial.
The University of Birmingham will act as the International Sponsor for the INTER-EWING-1 trial, with
ANZCHOG the National Sponsor for participating Australian and New Zealand paediatric and adult oncology centres. Associate Professor Geoff McCowage, Medical Oncologist Westmead Children’s Hospital, is Chief Investigator of this trial and has also recently joined the CRBF Medical Advisory Board, and brings a wealth of experience in sarcoma to this study.
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.