MoST/CaSP Sarc Programme Launch

We are thrilled to share a significant milestone in the mission to end sarcoma. CRBF, in collaboration with the Tom Hardyman Sarcoma Research Fund and Tour de Cure Spring Lunch—on behalf of the Andrew Dreverman Legacy for Sarcoma Research Fund—has proudly co-funded groundbreaking research that has led to the launch of a new sarcoma-focused programme through Omico Australia.

In November 2023, the Tour de Cure Spring Lunch raised an incredible $1.3 million in just four hours—an outstanding achievement. The beneficiaries included CRBF and, most importantly, the sarcoma community, alongside funding for onco-fertility support for young patients at the Royal Women’s Hospital Sydney.  The Spring Lunch showcases the incredible work of a remarkable team, together with Dominique Robinson, her daughter Cassandra Prothero and Dom’s bother Bruno Maurel, OAM.

On Sunday February 16, the MoST/CaSP/Sarc programme was officially launched and will exist under the leadership of Professor David Thomas and Dr. Maya Kansara. We are beyond grateful to them and to their team for the work they have placed into this pivotal programme.

Expected to be the largest of its kind globally, this programme will encompass a cohort of over 3,000 patients with international reach—an essential step forward in advancing sarcoma research and treatment.

Special thanks to Phil Baker the CRBF Media and PR Consultant who volunteers his expertise to bring these stories together.

Press Release - draft document for unsw:omico

International Childhood Cancer Day

 

At CRBF, we firmly believe that hope lies in research, and we are fortunate to have some of the world’s leading experts right here in Australia.

Over the past 12 months, we have been proud to co-fund the following innovative paediatric and AYA research projects.

CaSP Sarc Programme – Omico Australia UNSW

We are excited to announce the launch of  the MoST/CASP-SARC Initiative through Omico Australia, a pivotal new research project focused on improving treatments for sarcoma – one of the most challenging and aggressive cancers. This initiative will help us better understand sarcoma and pave the way for more personalised, effective treatments. 

 The research will focus on three main areas:

  • Harnessing Real-World Data – Analysing information from over 1,500+ sarcoma patients who took part in Omico’s MoST and CASP initiatives. Researchers aim to evaluate current treatment efficacy, identify critical gaps in care, and explore strategies to improve patient outcomes.
  • Studying Patient Samples – By analysing biological samples from past MoST-led trials, we aim to find clues (called biomarkers) that can explain why some treatments work or don’t work. This will guide us toward better therapies in the future.
  • Targeting Proteins for Personalised Treatments –Scientists will investigate specific proteins in sarcoma patients that could be used as targets for new, precision-based therapies. This could lead to improved outcomes and a better quality of life for people with sarcoma.

Hudson Institute Sarcoma Accelerator 

Under the expert supervision of Professor Ron Firestein and Associate Professor Jason Cain, this initiative will create a comprehensive collection of tumour samples from sarcoma patients.

By leveraging cutting-edge technologies, including artificial intelligence (AI), these samples will be studied in intricate detail. The  Programme will provide a comprehensive collection of tumour samples from sarcoma patients and grown as avatar/cell-line models. These models will be studied in detail using cutting-edge technology, including artificial intelligence (AI). This approach aims to discover new, more effective treatment options tailored to each patient’s specific type of sarcoma. By understanding the unique characteristics of each tumour, we can develop targeted therapies that are more likely to be effective.

The cell line models will be comprehensively profiled in three dimensions (genomic, epigenomic, and transcriptomic) to provide both gene-specific and pathway-level analyses of sarcoma cancer models. The models and associated data developed through this initiative will form an invaluable resource, helping researchers identify and utilise appropriate sarcoma models for investigational research.

Significantly, data will be shared with the research community via our portal (vicpcc.org.au/dashboard). This publicly available database, already used in over 50 countries, will aid sarcoma research on a global scale.

This pioneering effort aims to discover new, more effective treatment options tailored to each patient’s specific type of sarcoma.

NK Cell Programme Ian Frazer Institute 

A funding collaboration by several national sarcoma not for profit organisations, supporting the work of Professor Fernando Guimaraes and his team from the Ian Frazer Institute of Translational Research in Queensland, has led to a significant step forward in the search for a cure for some of the most sinister paediatric sarcomas. The Tie Dye Project, Richies Rainbows, The Kids Cancer Project, Bricks and Smiles – the Zach Minty Project, Tour de Cure Spring Lunch, CRBF, and ANZSA supported by generous donations from Kicking Goals for Xav, Stoney’s Steps Against Sarcoma and Stop Sarcoma

Paediatric sarcomas, including rhabdomyosarcoma, Ewing sarcoma and osteosarcoma, represent a group of malignancies that significantly​ contribute to cancer-related ​illness and mortality in children and young​ adults. These cancers share common challenges, including high rates of metastasis,​ recurrence or treatment resistance, leading to a 5-year survival rate of​ approximately 20% for patients with advanced disease stages.

Despite the critical​ need, therapeutic advancements have been limited over the past three ​decades.​ The advent of chimeric antigen receptor (CAR)-based immunotherapies offers​ a promising avenue for novel treatments. However, CAR-T cells have faced significant​ challenges and limited success in treating solid tumours due to issues​ such as poor tumour infiltration​, immunosuppressive tumour microenvironments​ and off-target effects. In contrast, the adaptation of CAR technology for​ natural killer cells has demonstrated potential in both haematological ​(blood) and​ solid tumours​ (A solid tumor is a mass of solid cancer cells that grows in organ systems and can appear anywhere in the body​), suggesting a new therapeutic strategy for paediatric sarcomas​.

CCIA Sarcoma Biobank

Young Australians fighting sarcoma, an aggressive tumour that mainly affects children, teenagers, and young adults, will welcome the announcement this week of an exciting new initiative to boost vital research into this disease.

The initiative, known as the ‘Paediatric Preclinical Biobank’, has been made possible through funding of $312,000 by the Cooper Rice-Brading Foundation, which received a generous donation from the Sutcliffe Family Trust in memory of both a young family member taken by sarcoma, and of Cooper Rice-Brading, who also passed away from osteosarcoma in 2017.

Jeremy Sutcliffe, the inaugural Chairman of the Cooper Rice-Brading Foundation, said: ‘Sarcoma is a devastating cancer which disproportionately affects young people and yet is not well known and attracts insufficient funding. The Biobank is a fantastic initiative on the road to developing effective interventions and treatments which will save the lives of our youth in the future.’

The Paediatric Preclinical Biobank will be located at Children’s Cancer Institute, where researchers have developed more than 400 ‘avatar models’ — living models of disease derived from the cancer cells of children with high-risk cancers including sarcoma. These models are vital for the testing of new therapeutic approaches. The funding will support the Biobank’s flagship sarcoma program and will allow 80 unique paediatric and adolescent and young adult (AYA) sarcoma models to be characterised, expanded and made available to the research community.

 

International Childhood Cancer Day 2024

International Childhood Cancer Day (ICCD) 2024Awareness around childhood cancer is never limited to one day, however on this day each year, we pause to recognise the needs and challenges of young cancer patients & survivors worldwide.  It is also a day where we honour the cherished memories of those whose lives have been lost.  

Approx 40,000 children/adolescents worldwide are diagnosed with cancer each year, & 1000 of these are Australian.  Concerningly, three of these children will lose their lives weekly to cancer.   Despite significant advancements in medical research & treatment options, young cancer patients still face immense challenges & the impact extends far beyond those diagnosed.

ICCD serves as a poignant reminder of the urgency required to address unique challenges faced by children with cancer; a celebration of progress made in paediatric oncology; & renewed commitment to equitable access to quality care & support for all children affected by cancer.   This day also recognises & highlights those who through unimaginable adversity, continue to make a profound difference in the lives of others.   

One such family, is that of Zac Minty diagnosed with rhabdomyosarcoma at the age of eight – they are a shining example of resilience, courage, & strength, much like Zac himself.  

Bricks & Smiles: the Zac Minty Legacy Project, was established by this remarkable family in honour Zac, who passed away aged 11.    LEGO was important to Zac whilst undergoing treatment as it provided “a pastime, a rehab tool, a challenge, and an escape.” Despite his very young age, he aimed to support other kids going through cancer treatment by providing the opportunity to pick out their dream LEGO sets. He also wanted to help find a cure for cancer.  

Bricks & Smiles directs fund to:   Providing kids undergoing oncology treatment a $400 grant to pick out their dream LEGO set(s); Australian paediatric/AYA sarcoma research (including clinical trials)  

In honour of Zak & in recognition of the outstanding work undertaken by his family to ease the burden on other children, CRBF will double all donations made to Bricks and Smiles (up to $2000) To donate or read more go to the link in our bio

In Zac’s family’s words:

“Zac was 8 when he was diagnosed with Rhabdomyosarcoma in the orbit of his left eye. He bravely fought for almost 3 years, passing away in 2022, just after turning 11. He was in year 6 at the time. 

Zac was an aspiring soccer goal keeper, a mad Liverpool FC fan and a kind, generous, thoughtful kid – a beautiful soul. He gave so much to us, he had so much more to give – but sarcoma took that away.  He stoically battled through some incredibly harrowing treatment, always putting on a brave face and anxious to look out for those caring for him. 

 Our family set up Bricks & Smiles in Zac’s name. He loved doing LEGO through his treatment, it was an escape and an opportunity to feel in control in a world where so much was out of his control due to cancer. He would do LEGO on the hospital ward, at Ronald McDonald House, or at home – there was always something on the go. With Bricks & Smiles, kids undergoing oncology treatment can apply for a grant to pick out their dream LEGO sets. They can build them where and when they like. 

It brought Zac joy to create, and it’s bringing other kids joy as they fight so hard against this cruel disease.  Bricks & Smiles has also been able to make a contribution to sarcoma research and will continue to do so – we must all work together towards a cure for sarcoma and other cancers. No less.  

Zac’s grandma Mary-Lou holds a cake stall every two weeks to raise money, zac’s mum and friends had their community sponsor their City to Surf run, Zac’s dad does the Bricks & Smiles website and his brother Elliott brought the school onboard to do SRC do fundraisers. Through all these little bits and pieces we stand up to cancer in Zac’s name. Granting the LEGO is us standing with other kids going through hard treatment. Bricks & Smiles also support the incredible work of researchers looking for a cure. 

On Zac’s birthday his family will gather together at Ronald McDonald House to sponsor and prepare a ‘Meal from the Heart’ in Zac’s name. This is a great initiative that community and corporate groups can support families staying at the house by cooking and serving a meal for them. Zac and family spent almost 270 nights at RMDH through his treatment and his family benefited from so many Meals from the Heart. Even when Zac wasn’t able to eat much he loved the Meals from the Heart nights, as it made everyone’s life easier. It made us all feel nourished as well as full. 

International Childhood Cancer Day is a day to support the children and adolescents that are battling cancer and their families, carers and communities. It is a day to support the amazing work of clinicians, medical and allied health staff, and medical researchers. It’s a day to commit to keep fighting this fight until we have a cure for childhood cancer. “

We urge you to support this outstanding initiative by going to www.bricksandsmiles.org

Mother’s Day Breakfast 2021

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.