Cooper Rice-Brading – 22-01-1999 -24-08-2021

22 January 1999 – 24 August 2017

Always and forever. 

“I think we dream so we don’t have to be apart for so long. If we’re in each other’s dreams, we can be together all the time.”

We would ask you today to honour Cooper’s memory by simply doing something for someone else. It doesn’t need to be grand, but something meaningful to lift the spirits of those around us.

In these very unsettled times, so many are hurting, and a simple act of kindness can make a world of difference.  

Coops showed us true strength in the face of adversity, and this made the world of difference to those around him, and continues to do so with the legacy he leaves behind.

The saddest of goodbyes…

In 2019, a visit to Chris O’Brien Lifehouse Day Therapy to meet with a young patient changed my life.

It was the first time I had been to the hospital after Cooper’s passing in 2017.  Simply driving through the suburb of Camperdown where the hospital was located would leave me cold, much less the thought of walking through the doors.  This time however, there was no option left to me as a remarkable young man, Fergus McCulla had appeared on our radar, and he had asked me to drop in on him while undergoing treatment. 

After sitting in the car in the carpark for what seemed to be an eternity, I finally found an inner strength to do what I was there to do.

Minutes later my anxiety was a world away.  Despite being in the throes of one of the most savage chemotherapy treatments, I will never forget Fergus’ warmth, his million-dollar smile, and his ability to somehow allay my anxieties, despite him having no idea how I was feeling or why?

That day I also met Fergus’ dad Dr Norman McCulla, gaining valuable insight into what can only be described as a uniquely remarkable family.  

Fergus’ life had not been at all easy.  At seven he was diagnosed with a paediatric cancer Non Hodgkins Lymphoma, which he fought and survived.  In his late 20’s, Fergus had a successful professional life, was pursuing his musical talents, had bought a divine country property in Brooklyn, and life was truly taking shape, when the unthinkable happened.  Fergus was diagnosed with the very rare spindle cell rhabdomyosarcoma.   

I left the hospital that day a changed person.  I learned to put my own anxieties aside, as the adversities in my life in comparison to the inspiring young man I had spent those hours with, paled into insignificance. 

Over the time that passed after that initial meeting, I had the privilege of spending more time with Fergus, and to meet his extraordinary family, three devoted and loving individuals who had endured more than any family should in less than three decades.  

I could not pretend to imagine the angst and heartache attached to a cancer diagnosis of a child aged seven, much less to face it all over again some 21 years later.  Fergus and his family were severely tested on so many occasions in his brief life, as a cancer diagnosis is only the beginning.  Treatment for sarcoma in particular, is as savage as the disease itself and leaves lasting mental and physical scarring for those involved.   Each time life served another curved ball, the family formed a ring of steel around Fergus, and simply got the job done.

Michael ‘Wippa’ Wipfli, who went on to form a special friendship with Fergus, his colleague Ryan ‘Fitzy’ Fitzgerald together with the team at Nova 96.9 heard of Fergus’ courage and the adversities he had faced for someone so young.  The team arranged a wonderful trip to New Zealand for Fergus and his family, to spend some very special time together in a place that held immense significance to Fergus, due to his love of the Lord of the Rings.  These were very special memories for each of the family and provided that strong sense of normal all sarcoma patients and their families yearn for so badly. 

For Fergus invasive radiation, brutal chemotherapies, experimental treatments, surgery, unimaginable pain and discomfort, and a plethora of side effects dominated his life once more, from the October 2018 to 20 August 2021, when the sheer exhaustion of the battle consumed this courageous young man.  

I cannot pretend to understand the gravity of what Fergus and his family have endured over two cancer diagnoses, and despite losing Cooper to this insidious cancer, I cannot pretend I know the depth of suffering the McCulla family are forced to confront daily, without their precious Fergus’ presence in their lives. 

Positives during the course of a sarcoma journey can be few and far between.  For me however, the lasting positive came from the friendship that formed with Fergus and his exceptional family. I know that I am not alone as this is a family who resonated with all who entered their lives.  

This special friendship is a lasting legacy of a very special young man, and something I will continue to treasure and hang on to very tightly during life’s challenging days ahead.  

Rest in peace Fergus. 

CCIA Phosphoproteomic Sarcoma Trial

CCIA Phosphoproteomic Sarcoma Trial

July 2021, saw the allocation of funding through the efforts of media heavyweight, Michael “Wippa” Wipfli in Celebrity Apprentice Australia, to the phosphoproteomic sarcoma specific trial, under the auspices of PRISM 2, Zero Children’s Cancer Programme. “Wippa’s” significant personal sacrifice throughout filming, and that of his young family, was on behalf of CRBF and sarcoma patients nationally.

The Wipfli Family Sarcoma Research Fund will be directed to the programme which will aim to conduct a high level tumour analysis on all sarcoma tissue samples with a view to discovering and matching personalised therapeutics not currently used for the treatment of sarcoma. Dr Emmy Fleuren will oversee this cutting edge research at the Children’s Cancer Institute of Australia, and enrolments will commence immediately.

To read more about this innovative research, please press the link below:

https://www.ccia.org.au/blog/community-funding-to-help-kids-with-sarcoma

The end of sarcoma awareness month

As the sun sets on Global Sarcoma Awareness Month, we would like to recognise the efforts of those working tirelessly to improve processes and outcomes for this cancer. Also, the State and Federal Governments for the significant funding that has been forthcoming for sarcoma research over the past months.

We would also like to acknowledge the tireless and ongoing work of sarcoma clinicians, researchers and medical professionals who form the multi disciplinary teams nationally. 

It is an excellent opportunity to use this timely reminder of the importance of early diagnosis and symptoms that can be so easily overlooked. Please don’t ignore unexplained pain or lumps and bumps that do not go away.

See your health professional and have sarcoma ruled out. If you are not 100% content with the outcome from your initial consultation, you are within your rights to request a referral to a sarcoma specialist. 

And for clinicians, please ask yourself: “Could this be a tumour?”

We thank all those who spread the word over the past month, and in doing so, potentially saved a life.

 

Let’s Talk More About Sarcoma Ep 2


If you are one of the 2300 people who will be diagnosed with sarcoma in 2021, this podcast may help you understand the importance of the medical team that are assigned to you.

In Episode 2, we hear from Pathologist Daniel Wong, Sarcoma Nurse Consultant Jacky Woods, Associate Professor David Gyorki, eminent sarcoma surgeon and ANZSA Director, Clinical Psychologist Deb York, and @rarecancers Patient Care Coordinator, Christine Cockburn. Each use their wealth of experience in this area to provide insight into the importance of the Multi Disciplinary Team when undergoing treatment for sarcoma.

We thank each of these very busy professionals for their time and for sharing their knowledge in this podcast.   Special thanks to Cathrine Mahoney and Darcy Milne for once more providing their expertise and professionalism to produce this series, and in doing so, providing a useful resource to all sarcoma patients and their families.

Press the link below

https://podcasts.google.com/feed/aHR0cHM6Ly9mZWVkcy5hY2FzdC5jb20vcHVibGljL3Nob3dzL2xldHN0YWxrYWJvdXRzYXJjb21h?sa=X&ved=0CAMQ4aUDahcKEwj4hNfd_pDyAhUAAAAAHQAAAAAQAQ&hl=en-AU

Salesforce for Sarcoma…


It all started with the CRBF Sarcoma Awareness Video…

Geovanna Pazmino, Lead Solution Engineer (Non-Profit)| Salesforce shared the video with colleagues who knew Celso and one of them, Jason Ghasson responded by asking what they could do to help?  After brainstorming a few ideas, they quickly realised that a target of raising $10,000 would be hard to achieve alone. This is where the group grew from 2 to 5 with Selin Ozdemir Hatcher, Lorenzo Demos ,and Judy Fang joining forces!

In a matter of days and with regular WhatsApp calls during lunch and after hours, the wheels were well in motion. Each of them reached out to different people in the organisation to get support and to encourage managers to spread the word in their team meetings. The response was immediate. People generously donated, with over $2,500 raised in the first few days. To amplify the message further, members of the engineering team created graphics for Zoom call backgrounds – just one of the many creative ideas used to drive awareness and raise funds as Sydney and Melbourne went into lockdown.

Many ideas were brainstormed (including possibly shaving someone’s head) and one that proved to be a great success was running 2 virtual exercise sessions: Zumba and Yoga. These sessions would help people stay active during the lockdown and keep their minds off of all of the crazy news that was going on.

How do we ever thank the team at Salesforce for their generosity of spirit?

First Nations Cultural Capability


We are delighted to welcome Kylie Tarleton to the CRBF team as Director – First Nations Cultural Cultural Capability..

Kylie is a proud Wiradjuri Woman from Orange in the Central West of NSW, who wears many hats .  Devoted wife, mother of two boys, one of her boys Cooper is a osteosarcoma survivor. Kylie spends her professional life Leading Aboriginal Education Strategy at TAFENSW and Kylie is also a renowned Aboriginal Aboriginal Artist. 

Kylie has agreed to oversee this fast growing and extremely important area within CRBF, to ensure we are delivering the best possible support and advocacy for our First Nations patients. 

If you or anyone you know could benefit from this service, please contact CRBF directly https://www.crbf.org.au/contact/

or by telephone 0412239020.

Redkite & Coles Dare to Dream Scholarships


Redkite and Coles  believe that cancer shouldn’t get in the way of achieving goals.

Do you know a teen who has or has had cancer?

If so, they could be eligible to receive up to $5,000 with a Redkite and Coles Dare to Dream Scholarship.

What is a Dare to Dream Scholarship?
Each year, Redkite and Coles offer scholarships of up to $5,000 to help teenagers who have had cancer achieve a goal that’s important to them, no matter how big or small.

Who is eligible?
Teenagers (13-18) who have or have had a cancer diagnosis at any time in their life.

How to apply
Applications are accepted via the Redkite website. Applications close 1 August 2021.

What can the scholarship be used for?
The scholarship can be used on anything that will help them achieve their goal, including laptops, courses, travel, instruments, wellbeing programs, equipment, coaching and more. Inspiration can be found here.

In 2013, Coles joined forces with Redkite, to support children and young people affected by cancer, and their families. During the last eight years, Coles has raised over $38 million to help thousands of Redkite families, enabling essential practical, financial, emotional and mental health support to be provided during their cancer experience.

The Redkite and Coles Dare to Dream Scholarship was established to inspire young people affected by cancer to achieve their goals and ambitions. This scholarship, funded by Coles, helps young people build their future. The possibilities that the Dare to Dream Scholarship creates for young Australians are life-changing.

Together, Redkite and Coles have awarded 294 scholarships since 2013 worth over $651,350.

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

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