The saddest of goodbyes to a courageous young man
Jye Ferrier 23 June 2003 – 29 April 2022Today, 18 year old Jye Ferrier was farewelled by his loving family and friends at a truly beautiful service on the Gold Coast.
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…
Official opening of the YouCan Centre, Chris O’Brien Lifehouse
A beautiful young life cut short by clear cell sarcoma
The 11th January, 2022 was one of the happiest days of Kienan Moore’s 21 years. A day when, in a fairytale ceremony, he married the love of his life, his fiance Olivia, surrounded by his adoring family, and loving friends. His beaming smile that was ever present, said it all.In a cruel twist of fate, Kienan and Olivia were to have only weeks to experience the unbridled joy of being newlyweds, before Kienan this week, tragically lost his life to clear cell sarcoma.
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
International Women’s Day – Tuesday 8th March, 2022
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.
Aus Genomic screening and clinical trials $185m
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
International Rare Disease Day 28 February, 2022
International Rare Diseases Day
Our brilliant scientists and health professionals together with investment in research can, and will make a difference to the 300 million people living with a rare disease.
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.
To read more go to https://www.rarediseaseday.org/
Inter-Ewing-1 clinical trial
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.
Afternoon Sports Podcast Auction 4 Sarcoma
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.
Fergus McCulla Psychological Support Programme
Fergus Mculla was a very special young man to many, staging a courageous battle with rhabdomyosarcoma, which tragically ended in August of 2021.
The team at CRBF formed a very special bond with Fergus and his remarkable family over past years, and as a result, many of us witnessed first-hand, the resilience and positivity Fergus showed throughout his treatment . No matter what life threw at him, his beautiful smile was never far away.
No matter what life threw at him, his beautiful smile was never far away. CRBF is delighted to announce the Fergus McCulla Psychological Support & Wellness Programme will be officially launched this month, and will be free of charge for all patients and families. Please press the banner to read more.
Fergus was also a voice for change whilst he underwent treatment, especially concerned about the level of formal support offered from the point of diagnosis and beyond. His courage was always evident in his ability to share his sarcoma journey on social media, helping others navigating the same pathway, and in doing so, providing support and a shoulder for many. Press to read more of this remarkable young man and the new CRBF programme named in his honour.
When it became time to name our psychological support programme, it was an obvious choice that it should bear Fergus’ name.
CRBF is delighted to announce the Fergus McCulla Psychological Support & Wellness Programme will be officially launched this month, and will be free of charge for all patients and families.
This programme will provide an additional layer to our peer support programme, and will be fully supervised by two experienced clinicians.
Please email Keith Cox, Director Patient Support at Keith.Cox@CRBF.org.au or Tania Rice-Brading Patient Support Coordinator at Taniarb@crbf.org.au should you wish to discuss or register for this programme.
Please see below a transcript of the speech delivered at the launch of the programme on Wednesday 1st December, at the Collaboration: The key to unlocking advancements in sarcoma Breakfast – delivered by Clinical Psychologist, Louise Hird.
‘My journey into the traumatic world of Sarcoma began as unexpectedly as everyone’s does. My son, George, who you many of you heard speak at the CRBF corporate breakfast a couple of years ago, was very good friends with Cooper Rice Brading. Cooper was great fun, had a wicked smile, played in the same cricket team as my son and was an avid Swans fan – he had a big future but his future also included Sarcoma. His diagnosis came out of the blue, was sudden and we all thought he would be fine. He wasn’t. We knew nothing about Sarcoma – I am not sure I had even heard of it. I now know that Cooper’s story is typical of many young Sarcoma sufferers.
My son’s relationship with Cooper and involvement with the CRBF as an ambassador for the Foundation, kept myself and my family connected to Tania, Colin and Mitch and the CRBF. Through that relationship, I have learnt a great deal about the perils of the diagnosis. More recently a dear friend who is in this room today, has been diagnosed and I have watched him and his family struggle with the same uncertainty, confusion and fear. Not only is very little known and very few treatments available but there is very little support for the individuals and their families diagnosed with sarcoma.
I am a Clinical Psychologist working in private practice. I am very aware of the lack of funding and access generally to emotional and psychological support services in the community and how difficult it can be to navigate mental health services and find access to the right service or provider. I have learnt that Sarcoma patients and their families have very particular needs. They often feel very isolated as they don’t have the same access to support groups as other Cancer sufferers. The support that they need is simply not available. Sarcoma is extremely rare and that means that a diagnosis is extremely lonely and limited research has been done in relation to the specific needs of people diagnosed with Sarcoma. This is changing thanks to our colleagues at Sock it to Sarcoma in WA.
I spoke at length with CRBF about this difficulty and began to work with my colleague Dr Lahvinya Kulaendra, a practicing psychiatrist, to develop a program that might address the very apparent gap in services available to Sarcoma sufferers. Lahvinya and I have taught together on a number of programs working to develop psychological skills in young medical students, psychologists and psychiatrists. This project presented us with some unique challenges, these were not a group of people identified because of mental health difficulties but they were a group of people very much in need of support. There is very little funding available to research and understand the scope of the unmet needs or to even clearly identify what the needs of Sarcoma patients are? And how could we fund such a service? By tapping into psychology students hoping to apply for Clinical Masters programs we found a group of people with the right skills and motivation to offer their services voluntarily. We approached the CRBF to financially support the development and delivery of a training program for the volunteers and they agreed. We selected our first group of volunteers who are all here – Merran Cunningham, Mitch Rice Brading, Nathan Salgo and Henry Foley – and so this new project began to take shape.
So many people have contributed their time voluntarily to make this new program possible. Without this collaboration and without volunteers it could never have happened.
Many thanks to Keith Cox, clinical nurse specialist whose deep knowledge and understanding of the nature and unpredicatable trajectory of Sarcoma and of the patient’s needs was invaluable; to Richard Boyle , sarcoma specialist and orthopeadic surgeon, for taking the time to teach us about the pathology, etiology and complex treatment and management of the illness, to Mandy Basson from SockItToSarcoma! who briefed us on the huge deficits in the emotional and psychological support offered to the patient’s and their families through the research her team is doing in WA.
Finally, to the patients and families who joined us at the invaluable and at times heartbreaking round table discussions. Here the patient journey was relayed, to help us understand the deficit of information available, the limited treatment options, the loneliness and the isolation of being diagnosed with a rare cancer where there is little funding and support groups are limited. And lastly many thanks to our volunteers for the amount of time they have given to this program and for their patience as the projected developed and changed.
I am very excited that we are able to launch the Fergus McCulla Psychological Support and Wellbeing Programme today. There is no doubt that there is great need in the Sarcoma community for such a program and I am very honored to have been part of this collaborative venture. I hope that with further collaboration and funding we will be able to expand not only our medical understanding of the pathology, management and complexity of sarcoma treatment but also to offer individuals with Sarcoma support as they confront their diagnosis, treatments and suffering.’