Young adults living with incurable illnesses will have access to respite care when Australia’s first hospice for young people opens on Sydney’s northern beaches next year.
NSW Premier Gladys Berejiklian together with major funders of the project, two of Australia’s leading philanthropists Kay and Greg Poche, today turned the first sods of soil at the site of the adolescent and young adult hospice, which will provide palliative care for 15 to 24-year-olds and their families.
The facility is the first of its kind in Australia, and will lead the way for similar facilities across the country for young people, who are currently forced to seek respite care in aged care facilities.
The facility cannot come soon enough. Young adolescents are over the age of 18, are currently no longer able to use the Bear Cottage paediatric respite facility.
The $19.5 million development is the result of combined state and federal government funding, community fundraising and philanthropy, supported by a very generous contribution from Kay Van Norton Poche and her husband Greg Poche.
Ms Van Norton Poche, who has supported Bear Cottage for many years, decided to back the project after learning young people were often seeking respite in nursing homes and rehabilitation centres.
“I just thought, we’re better than that. Dignity begins with life, and each life has it. So let’s give it to people that we can, when we can,” she said.
Member for Manly James Griffin said the facility would provide care for young people across NSW, including from rural and regional areas.
“This is a wonderful example of what happens when government, community and philanthropy come together to unite behind a single cause,” he said.
As 7am Friday the 7th May arrived, the rain that had been with us in Sydney for many days, together with the dark gloomy skies, momentarily cleared, and sunshine bathed the Wisteria Room, at the Centennial Park Homestead.
Right up until the 11th hour, this event hung in the balance due to the Eastern Suburbs of Sydney Covid scare, and the NSW government restrictions that followed.
The welfare of our guests would always be front and centre of this event and immediate procedures were put in place to allow cancellations and protection of those who still wished to attend.
The support of our special guests for the morning, allowed us to continue with a full programme, and for this we thank the ever-professional Melissa Hoyer, Cathrine Mahoney and Sarah McGilvray, the unflappable Georgie Katsanevenakis, together with the endless support of Jarrad Sapsford, and Marc Chami. Each of these remarkable individuals did not waver with their support of the event.
Melissa was outstanding. Her warmth, attention to detail and professionalism is second to none, and the careful preparation she places into hosting duties, the love and support she has shown the Rice-Brading family and Cooper’s legacy, together with the time she donates for charitable purpose, is truly remarkable. We are indebted to Melissa for her willingness to host this function over three years and the astonishing thoughtfulness she places into doing so.
Cathrine and Sarah are two of the most grounded women in the media, despite what they have achieved throughout their respective careers, with each of their stars continuing to rise. Their segment on parenting, relationships and motherhood provided a light-hearted and funny account of the day to day perils we are all so familiar with. Sarcoma is not a light subject, and to have these talented women lift the mood of the morning is something so very special to all of us at CRBF.
Our special guest speaker, Georgie Katsanevenakis was exceptional. This is a young woman with the world at her feet. Georgie shared her sarcoma diagnosis and her inner thoughts with a spell bound audience, and never one faltered. Despite the adversities in her life, she continues to inspire those who meet her, with her warmth, positivity, and grace. For Georgie it is a case of “watch this space”…
Jarrad Sapsford and Marc Chami are two exceptional young men who attended Sydney Grammar School, and were in the same year as Cooper. They bravely performed the poignant A capella performance of ‘Shenendoah’ at Cooper’s service in 2017, together with Rob Hao, and Jasper Schoff. Marc and Jarrad performed flawless recitals of Memories (Maroon Five), Your Song (Sir Elton John) and La Vie En Rose (Edith Piaf). As in past years, you could hear a pin drop as they held our guests in the palms of their hands.
CRBF’s own Mitchel Rice-Brading may be a Clinical Psychologist in waiting, however he is also a very polished public speaker. He conducted what was to be an interactive piece with our guests, which was severely restricted to due to Covid. A combination of thank you’s and roasts, he was highly entertaining and topical.
We thank our major sponsors of the breakfast, The Fresh Flowers Group, Autore, Glasshouse Fragrances and Lindt Chocolates, together with a list of prize donors too numerous to mention, but will be recognised separately for their generosity. Without your contributions, this event would not be possible.
Thanks must also go to the Trippas White Group and in particular Leena Chugani and Amy Tran for their excellent organisational skills, and the hospitality staff for keeping our guests safe on the day.
Ed Howard from East Coast Creative provided our beautiful photographs on the day, together with a selection of personal shots from Georgie Kats. CRBF would like to thank Ed for volunteering his time to capture these important memories.
Zoran Loveski from Sodium AV has been working with CRBF for three years, and is a consummate professional in his field. He also volunteers for the Children’s Hospital at Westmead, and we wish to acknowledge his dedication and the provision of the highest standard of audio visual production for our events.
Finally we wish to thank our volunteers, in particular Robin Todd for her tireless work over many weeks to secure raffle prizes, Kirsten Martensen-Arms, Kate Longden, Claire Bonic, Martin Rossleigh, Keith Cox, Tracey Neaverson and Gloria Gapes.
Because today is Mother’s Day it is one of three days each year we can use the CRBF social media platform for a post with a personal twist.
Those who know me, know I love our children Mitchell and Cooper to the moon and back, and together with CRBF co-founder & long-suffering husband Colin, & errant French Bulldog Betty, (not necessarily in that order) they are put very simply, my life.
On Friday, Mitch, delivered a flawless segment at the Covid ravaged CRBF Mother’s Day Breakfast. He roamed the room & thanked our key guests. Others were not quite so lucky. I was one of them.
For those of you who didn’t attend this event Mitch informed our guests I “incessantly hounded the event organisers to have the venue serve alcohol @ 7am” for our hallmark CRBF breakfast function – in particular “a brick of Bundaberg Rum”, I sat for two minutes with the words to “killing me softly “, playing in my mind, eyes roaming the room looking for imaginary thought bubbles. “Where is she keeping that hip flask?” “Did the staff actually serve her coffee in that cup?”
Mitch I know you choose my retirement home, but you skipped a step – I choose where your inheritance goes.
There is a more serious note for today’s post. CRBF would like to wish all the remarkable mother’s and significant others, joy, peace of mind, time with your loved ones, and a special day making special memories. It is a day when we remember and honour those whose Mother’s Day will never be the same, as their child or indeed their mother no longer walks beside them.
To those mums, this day will always be met with a multitude of mixed emotions. A stark reminder of a perfect life forever altered. Mother’s Day is a day to surround yourself with those who matter most, to do something simple that brings joy, or to simply march to the beat of your own drum. There is a no size fits all solution to these special days in the calendar.
Whatever form Mother’s Day takes for you, we send our love to each of our mums, & thank you from the bottom of our hearts for the difference you make in our lives.
Karen Simpson and Jo Capp are remarkable mums with equally remarkable sons.
Both Karen and Jo-Ann stood by their son’s sides every step of the way, from the day of their respective sarcoma diagnoses, throughout savage treatment regimes, and beyond. Neither missed a beat.
With Mother’s Day fast approaching, it is timely to remember those mums whose lives have been impacted by tragedy of varying degrees, and to hold them in our thoughts and in our hearts.
Jake’s story
In the words of his mum, Karen Simpson
Jake Simpson was a normal sport mad young man living a normal life, when his life changed irreversibly. Jake was diagnosed with cancer on 12th December, 2012. On Christmas Eve in a further bitter blow, that cancer diagnosis was confirmed as Ewing Sarcoma.
Jake commenced treatment on Boxing Day, and was given the daunting prognosis of a 25%chance of survival.
The cancer was first located in Jake’s spine, hip and chest plate when the initial cancer diagnosis was made, and by Boxing Day, it had metastasised to his collar bone, shoulder, and throughout his skull and bottom.
Chemotherapy initially worked, and in August Jake had a stem cell transplant and by October the family were informed he was in remission. For 15 months he lived normally celebrated his 21st birthday and continuing to reach all medical milestones.
Early January 2013, he complained of a sore back and on Australia Day it was confirmed the cancer had returned, this time no chance of survival unless a cure was found.
November we were told he wouldn’t see his 23rd birthday after chemo and radiation it just wasn’t working. 12 weeks later on the 17 February he closed his eyes.
Jake never once complained and never asked why? He started a bucket list, and those last 10 weeks he had adventures with his family. Unfortunately the sarcomas on his spine paralysed Jake and he was bed ridden for the last few weeks of his life, which according to his mum Karen, “annoyed him”.
Jake fought courageously, but that cure just didn’t come.
Today these woman honour their sons with the tireless work they each do to advance sarcoma awareness and funding, despite the hand of cards they have each been dealt.
Reid’s story
In the words of Jo-Ann Capp, Reid’s mum
Reid’s diagnosis of Ewing’s Sarcoma came when he was a month off turning 6 and it was incredibly life changing for all of us. Occasionally he complained of a sore leg. We put it down to growing pains.
On May 21 2007 we were told he would be facing massive doses of chemotherapy, perhaps some radiation on his lungs, the loss of his right tibia with only a 30-60% chance that he would live.
We got through all the treatment then due to having his tibia removed and replaced with his left fibula Reid went on to break this leg 14 times over the next 10 years. He spent his entire childhood until he was 16 in either a cast or with an Illarzarov frame attached to straighten or lengthen his leg. He is a pretty resilient little bugger, and not too mention a demon on crutches!!
He is now 19 (nearly 20) and enjoying everything a young man his age can do! He is at University in Brisbane studying to be a teacher and loving his freedom living away from the watchful eyes of his parents!
As if this process was not enough?, Jo-Ann went on to write a book, Four Hot Chips – “One family’s story of childhood cancer, love and how they survive, and how they nearly didn’t”. The book is now available through Audible, by following the link below:
CRBF and the sarcoma community wish to extend our sincere gratitude to both Karen and Jo-Ann for their courage, and for their unwavering dedication to funding a cure for this insidious cancer.
World-first clinical trial targets immune molecule IL23 as potential treatment for sarcoma
Sydney researchers are testing whether an existing medication could be repurposed to treat sarcoma.
Garvan team leading IL23 sub-study (clockwise from top left) Dr Maya Kansara, Prof David Thomas, Dr Mandy Ballinger, Dr Frank Lin, Keith Thornton, Dr Subo Thavaneswaran, Dr John Grady
Media Release: 26 March 2021
Recruitment is now open for a national clinical trial that will test whether an existing therapy for psoriasis can help treat patients with sarcomas, which are rare cancers arising in the connective tissues (bone, muscle, tendons, nerves, fat, cartilage and blood vessels) and may occur anywhere in the body. In particular, the trial focuses on osteosarcoma, a rare but aggressive form of bone cancer that most commonly affects teenagers and young adults.
The phase II clinical trial, which is a collaboration between the Garvan Institute of Medical Research, Omico (the Australian Genomic Cancer Medicine Centre) and the University of Sydney’s NHMRC Clinical Trials Centre, will investigate if treatment with a drug targeting the immune molecule IL23 could improve outcomes for sarcoma patients.
The new trial is the first globally to test a new anticancer pathway for sarcoma. It is supported by the Cooper Rice-Brading Foundation, the Australian Government, the NSW Office of Health and Medical Research, SunPharma, The Kids’ Cancer Project, the Matthew Fisher Sarcoma Research Fund and the Daniel Allchin Race for a Cure, and brings new hope to those affected by sarcoma.
“This immunotherapy trial is part of our national Molecular Screening and Therapeutics (MoST) trials program, and will be open in at least eight centres nationally,” said study chief investigator Professor David Thomas, Head of the Genomic Cancer Medicine Laboratory at Garvan, Director of The Kinghorn Cancer Centre and CEO of Omico.
“Sarcomas are aggressive cancers with few treatment options. For osteosarcoma in particular, there have been few advances in treatments for this form of cancer in four decades. We hope that this clinical trial, which will investigate if treating patients with a sarcoma with a medication currently in use for another condition will have anti-cancer effects.”
Immunotherapy for osteosarcoma
Sarcomas are rare cancers of connective tissues such as fat, muscle and bone. They particularly affect the young, with osteosarcoma, or bone sarcoma, among the ten most common cancers affecting Australians between ages 15 to 29.
The five-year survival rate for sarcomas remains as low as 65%, while options for patients with incurable disease are very limited.
The new clinical trial follows an earlier study that demonstrated the immune molecule IL23 is central to the development and progression of soft-tissue and bone sarcoma in animal models. By targeting IL23, the study authors were able to successfully shrink osteosarcoma tumours in mice.
“Our previous research showed us that when we blocked IL23 in mice with osteosarcoma, their tumour growth slowed,” said Dr Maya Kansara who leads the Immunobiology of Cancer Group at the Garvan Institute.
“We hope that our promising pre-clinical results will translate to improved clinical outcomes in osteosarcoma patients.”
The trial, opened to enrolment this month, will examine how patients with advanced osteosarcoma and soft tissue sarcomas respond to the anti-IL23-targeting treatment. It is a single-arm, open-label phase II trial design which means all 32 sarcoma patients planned to be recruited will receive the treatment.
“If we see promising signs from this initial study, we believe that targeting IL23 may play a role in the treatment of many cancer types,” said Professor Thomas.
Robert Beech-Jones, Chairman of the Cooper Rice-Brading Foundation, said “CRBF is delighted to have the opportunity to support this highly significant research. We thank Professor David Thomas and Dr Maya Kansara and the highly accomplished team behind this research, for the hope this world first study provides to sarcoma patients. This exemplifies the high level research Cooper envisaged this Foundation would support.”
For further information about the clinical trial [ACTRN12620000984998] please see the eligibility criteria. To register interest for the trial please contact the NHMRC Clinical Trials Centre, University of Sydney on most@ctc.usyd.edu.au or 02 9562 5000.
Declaration: This clinical trial is being supported by the Australian Government, the NSW Office of Health and Medical Research and SunPharma. There are no conflicts of interest. The clinical trial is being sponsored by the University of Sydney and is being conducted under the Australian CTN scheme. The research has ethics approval from St Vincent’s Hospital Human Research Ethics Committee.
Media contact:
Dr Viviane Richter, Senior Marketing and Communications Officer, Garvan Institute, v.richter@garvan.org.au
Our congratulations to Tom Bell Bird, who last week received the 2021 Cooper Rice-Brading Foundation Award from the Sydney Grammar School Cricket Club!
Traditionally, this trophy is awarded for outstanding performance in the annual Tri-Grammar tournament, which takes place between the Grammar schools from Sydney, Melbourne, and Brisbane. In early 2017, amidst his gruelling sarcoma chemotherapy regime, Coops secured 5/20 against Melbourne Grammar, and this award acknowledges that.
Due to COVID-19, however, a Tri-Grammar tournament was not possible this year. Instead, the award was presented to the individual who best exemplified the traits Coops stood for: courage, resilience, and never being told no. Tom stood for all this and more, and was also able to construct a very tidy season with the bat, making him the obvious recipient.
We could not be more excited at CRBF to hear that our dear friend, @mollycroft_ , has been recognised at the 2021 NSW Women of the Year Awards!Molly was diagnosed with osteosarcoma on her 12th birthday, and yet just 3 years later, has become a pillar of strength and source of inspiration for Sarcoma patients both young and old.
Her commitment to spreading Sarcoma awareness, along with her tireless efforts raising funds into research, are emblematic of a drive and maturity well beyond her years.
Not only is Molly “One to Watch” – she’s been worth watching for years, and we’re so happy her efforts have been recognised!
Molly is pictured with the Hon Bronwyn Taylor, Member of the Legislative Council, Minister for Mental Health, Regional Youth and Women and
Member of The National Party.
“His memory motivated me and kept me going in the tough parts of this challenge”…
Over the last weekend, longtime school friend of Coops, @soshbehnia, completed the “Dave Goggins’ 4x4x48 Challenge”. This involves running 4 miles, every 4 hours, for 48 hours. For our Australian audience, this is the equivalent of 76.8km!
Battling muscle soreness, aggressive fatigue, and the late New York winter, Sosh not only smashed the challenge, but he raised over $1500 in the process, well clear of his $500 target, all of which is headed directly towards sarcoma research.
We can’t thank Sosh enough, not only for his contribution towards finding a cure for sarcoma, but also by growing Coops’ legacy by spreading sarcoma awareness globally 💛. The collage above is of some of the selfies Sosh took after each 4 mile effort.
If you are interested in raising funds for sarcoma research, don’t hesitate to message us on Instagram or Facebook, or get in touch via email on crbf@info.org.au. For a small organisation like our own, it’s initiatives like Sosh’s which not only raise critical funding for sarcoma research and patient support, but also keep sarcoma firmly in the spotlight.
International Childhood Cancer Day (ICCD) is a global collaborative campaign on the 15th February, to raise awareness about childhood cancer, and to express support for children and adolescents with cancer, the survivors and their families. (ICCD, 2021)
Every year, more than 400,000 children and AYA’s are diagnosed with cancer, with Sarcoma accounting for up to 20% of these diagnoses.
As the sun sets on the 2021 ICCD, we recognise and silently support those young patients and their families walking this road, and cherish the memory of those whose lives have been lost.
We thank those remarkable individuals and organisations who are immersed in childhood cancer. From the dedicated paediatric, and adolescent and young adult, nurses, specialist support staff, and medical oncology teams, to the passionate researchers working tirelessly towards a cure, the state and federal governments for their ongoing commitment to advancing children’s cancer research, and finally, the not-for-profit organisations, often driven by personal and devastating loss, which help support the research into a cure.
Each of these bodies and individuals has an equally important role to play, as we strive collaboratively to find a cure for all childhood cancers.
The role of the Sarcoma Clinical Nurse Consultant is pivotal to not only the quality of patient care, but assists greatly in supporting and navigating the patient through one of the most savage cancer treatment regimes.
“Patients diagnosed with sarcoma experience complex treatment pathways and unmet needs. The Sarcoma Clinical Nurse Consultant position was recently established in Western Australia to improve the quality of patient care. As this role is new in Western Australia and nationally, research is required to understand the duties, benefits, and gaps of the position.” (Perspectives of the sarcoma clinical nurse consultant role: A qualitative study conducted by a stellar team in WA, Rhys Weaver, Moira O’Connor, Irene Ngune, Richard Carey-Smith, Jane Phillips and Georgia Halkett) thoroughly explores the requirement for this critical role within the sarcoma MDT.
Congratulations to the team , and to our WA counterparts, Sock it to Sarcoma! – for facilitating this much needed research.
