Official opening of the YouCan Centre, Chris O’Brien Lifehouse

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.

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

IMG-0090
IMG-0100 (1)
IMG-0096
previous arrow
next arrow

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.

STRASS 2 clinical trial receives MRFF funding

Eminent specialist surgical oncologist Associate Professor David Gyorki, together with Associate Professor Anne Hamilton, and colleagues from Royal Prince Alfred Hospital led by Associate Professor Peter Grimison, Princess Alexandra Hospital led by Professor Andrew Barbour collaborating with the national scientific body for sarcoma, ANZSA, have received a sizeable grant from the Medical Research Future Fund (MRFF) under the Rare Cancers, Rare Diseases and Unmet Need (RCRDUN) scheme.

The grant is to run the international trial in Australia – “A randomised phase III study of neoadjuvant chemotherapy followed by surgery versus surgery alone for patients with High Risk RetroPeritoneal Sarcoma (STRASS 2)”.

“Eligible Australian patients with retroperitoneal sarcoma at high risk of recurrence will be able to participate in this randomised controlled trial designed to answer the question of whether preoperative chemotherapy improves outcome for patients. The current standard of care for these patients is surgery alone. However, the risk of recurrence for many of them is 50% or higher.

The purpose of the STRASS 2 trial is to determine whether the administration of chemotherapy before surgery represents a better treatment compared to surgery alone and if the administration of chemotherapy before surgery is safe. It is also to assess whether specific chemotherapy can be used to reduce recurrence risk in a patient with either high-grade leiomyosarcoma or high-grade dedifferentiated liposarcoma. 

It is the first time a trial has studied the role of preoperative chemotherapy specifically in patients with retroperitoneal sarcoma, an anatomical location with unique challenges and disease patterns.” (ANZSA, July 2021)

The trial, led by the European Organisation for Research and Treatment of Cancer (EORTC) has participation from Europe, Canada, USA and now Australia.

“With aims to recruit 40 Australian patients, the STRASS 2 trial will open at Peter MacCallum Cancer Centre (VIC) as the lead site, with A/Prof Hamilton as the lead oncologist on the trial. The trial will also open at Royal Prince Alfred/Chris O’Brien Lifehouse (NSW) and at the Princess Alexandra Hospital (QLD).

About clinical trial

Please speak to your treating team about this clinical trial to see if you are eligible for it.

Remember that participation in a clinical trial is voluntary and that you should never feel forced to participate in it.

Before you agree to participate in a clinical trial, it is important to be as informed as possible. It can be helpful to write down questions you have before seeing your doctor.” (ANZSA, July 2021)

Please refer to the ANZSA website for further information by pressing the link below

https://sarcoma.org.au/news/news/successful-mrff-grant-for-strass-2-trial

Let’s talk “more” about sarcoma


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.

To listen, please press on the link below:

https://podcasts.apple.com/au/podcast/lets-talk-more-about-sarcoma/id1521584488?i=1000527963130

Zero Children’s Cancer research grant


To mark the commencement of Global Sarcoma Awareness Month, it is our great pleasure to announce the “Wipfli Family Sarcoma Research Grant”, a $186,799 grant, made possible by the family’s incredible efforts throughout Celebrity Apprentice Australia.  But it doesn’t end there – joining with us is The Kids Cancer Project who have stepped in and doubled the grant.

All in all, $373,597 will be heading towards sarcoma specific research under the auspices of  the Children’s Cancer Institute of Australia  and the Zero Childhood Cancer Phosphoproteomic Study!

The study will be led by Dr Emmy Fleuren, the sarcoma research lead in the Translational Tumour Biology Group at the CCIA. Emmy is leading the way in the paediatric and adolescent space in Australia, and the future of sarcoma is all the better from having her expertise.

We need not remind you of the efforts of Wippa and Lisa to facilitate the money raised throughout Celebrity Apprentice.  They are an incredibly special family, and their efforts to grow Cooper’s legacy is inspirational.

The Kids Cancer Project, with a special mention to CEO Owen Finegan, have supported high level paediatric, adolescent and young adult cancer research in Australia for almost three decades.  Their commitment to funding research projects for all childhood cancers is as humbling as it is life-changing for those young patients who stand to benefit.

We extend our deepest gratitude to each of these outstanding contributors to sarcoma research in Australia.

Head to the Children’s Cancer Institute social media accounts to read more about the research!

Sarcoma Awareness Month – The important role of the carer

ANZSA begin their Sarcoma Awareness Month webinar series with an in-depth look at the role of the carer.

Mandy Basson, Managing Director of Sock it to Sarcoma, and Associate Professor Georgia Halkett will join ANZSA Consumer Advisory Panel member, Karen Laurati in shining the light on an area which is so often overlooked.

Mandy is well -versed with the often unmet needs of the carer, having been by her daughter Abbie’s side from diagnosis and throughout her treatment, then continuing her daughter’s vision to make a profound difference in the lives of sarcoma patients.

The organisation has provided over a decade of support to patients, families and carers and continues to to provide an important resource for those sarcoma patients who need it most.

Associate Professor Georgia Halkett will bring her highly professional perspective to the table, after the release of her recent research paper earlier this year – The unmet needs of carers of patients diagnosed with sarcoma: A qualitative study.

If you or a family member is a carer for a sarcoma patient, this is a webinar not to be missed.

Use the QR code below to register, or go to the ANZA FaceBook page by pressing the link below:

https://www.facebook.com/ANZSarcoma/

Unmet needs for patient support in rare cancers

Christine Cockburn, Patient Care Co-ordinator with Rare Cancers Australia shares her vast experience on addressing the unmet needs of those who live with a rare cancer. She will be joined by ANZSA Consumer Advisory Panel member Karen Laurati, who knows this road well, having been diagnosed with sarcoma, undergone treatment, and now enters survivorship, and a very new phase of her life.

Christine leverage her vast experience with a broad cross section of rare cancers, to provide compelling insight into an area that has the propensity to be overlooked, from treatment and throughout diagnosis. This will be balanced by Karen’s invaluable patient perspective, having lived the nightmare of a sarcoma diagnosis.

If you are a patient diagnosed with a rare cancer, in particular sarcoma, or a carer/family member, this webinar will be an extremely useful tool in finding additional resources which may potentially assist you.

Use the QR code below to register or press on the link below to go directly to the ANZSA website. https://www.facebook.com/ANZSarcoma/