The Australia New Zealand Sarcoma Association annual scientific meeting was held in Canberra on 11th and 12th of October, bringing together a collection of the most stellar medical and scientific minds, all working toward a cure for sarcoma.

The conference showcased the ground breaking developments in research which will and in some cases are, of benefit to sarcoma patients globally, thus providing untold hope for the future.

It was an enormous privilege for our own Mitchell Rice-Brading to open the conference, with a passionate and heartfelt speech which was central to his own experiences of losing his younger brother Cooper, to sarcoma.

 

Transcript below:

 

My name is Mitchell Rice-Brading, and I am the brother of the young man whose name our Foundation proudly bears.

I would like to begin today by extending my deepest gratitude to ANZSA, and in particular, Dr Denise Caruso, for having me speak this morning, and I would like to impress the great privilege that I personally attach to the opportunity.

I’d also like to acknowledge the work that goes into both organising an event of this magnitude, and to making the effort to attend. As a recently graduated uni student, I am currently working 20 hours a week as a bartender.  I have just returned from the World Cup in Japan, and has another trip planned to Thailand at the end of the month, I can empathise with all of you in the room. We’ve all made sacrifices to be here today.

On a more serious note, my family and I find ourselves as incidental members of the greater sarcoma community.  It was unplanned, and unexpected. Unlike us, most of you in this room have chosen to devote your time working to improve the plight of those touched by a sarcoma diagnosis. We are humbled by the selflessness of choosing such a career path.

We have come to realise, that with the heartache and devastation that is a sarcoma diagnosis, it has also become the driving force for what ultimately brings us here today, motivated to instigate critical and positive change.

The gravity of losing my brother to this cancer is something I find difficult to articulate.  I can never see a day when the senseless loss of Cooper’s life will be something I can rationalise. Tragically, my brother became one of the many real faces of sarcoma, and now I am all too aware of what sarcoma represents, and why conferences such as this, are yet another crucial step forward.

Because, for all the scientific complexities, there is one unavoidable constant that follows a sarcoma diagnosis –  pure devastation.

Walking the road beside Cooper, I felt helpless. Sleepless nights pondering the future; The ever- present guilt because I was not the one afflicted; and the unwavering desire to say and do the right things to provide comfort, but ultimately feeling like nothing was ever enough.

And then there was the soul-crushing final act, helplessly witnessing the brother I grew up with, regress into a mere shell of his larger than life self, when treatment options were exhausted. Sadly, this an all too regular outcome for young sarcoma patients.

Nonetheless, my family were left with a choice: Sit on our hands and do nothing, or perpetuate Cooper’s memory and his vision, by joining with the remarkable group before me, and make a contribution no matter how small.

It is of note that as recently as three and a half years ago, when Cooper was first diagnosed with osteosarcoma, treatment options were severely limited. This, of course, was no reflection on his stellar medical team – it is simply the way it was.

Similarly, a body of up to date, reliable, and user friendly information for patients and their families proved impossible to source. In our family, and I suspect in others, we introduced one policy: No Internet. The information that presented itself after one google search was astoundingly outdated, and generally soul-crushing for a recently diagnosed 17 year old boy.

Compounding this, was the fact adolescent patients were, and are, routinely treated in adult facilities, some barely past the age of 14. I dare say it won’t shock you to know, the needs of a teenage boy are vastly different to those of a 70 year old man.

Just over three years later, and the positive change is palpable. The emergence of future adolescent sarcoma centres, such as the one proposed for Chris O’Brien Lifehouse; dedicated sarcoma nurses helping patients through the medical minefield; imminent clinical trials for a number of sarcoma sub-types; cutting edge genomic sequencing programmes and trials; peer reviewed studies published in significant medical journals – the list goes on…

This, together with the highly credible and relevant information available on the new ANZSA website, has indeed removed a lot of angst out of those first weeks post-diagnosis. The change is visible and there for all of us to see, and is largely attributed to the persistent work of a number of those in the room today.

We are truly privileged to be working with some of the most distinguished clinicians and scientific researchers in this field. Then there are those who are driven by tragedy, who work tirelessly for change, and have created the most outstanding legacies to the loved ones they have lost, through fundraising and awareness campaigns.

I look around this room, and it is difficult not to be humbled and somewhat moved.  You inspire us as the relative new kids on the block, to adopt the patience, resilience and determination you have all shown over many years. They say Rome wasn’t built in a day, and nor will sarcoma be cured in a day, and it is these qualities in each of us, which will ultimately lead to critical advancements.

I don’t necessarily have what it takes to be a medical oncologist, nor have the deep biological knowledge required for meaningful research. But all of us in the room today are fighting sarcoma as a team, and all players in a team have a role.  At the Cooper Rice-Brading Foundation, our role is clear: to assist in facilitating your work, and to support you in future initiatives. And when we look at the progress we’ve already made, it is simply difficult not to be inspired, and to push through on the difficult days.

From all of us at CRBF, we extend our deepest gratitude to each of you for the outstanding work you continue to accomplish in this field, and for openly accepting us as a small part of this stellar team.

All of us here today are aspiring to make sarcoma history, and we’re not giving in.

 

 

 

Press here to view full interview

https://www.9now.com.au/today/2019/clip-cjrsgj2hy00000gmpt4vndnxv

Wednesday 6 February saw the launch of the CRBF national sarcoma awareness video on the Nine Network, Today Extra.

The interview was superbly crafted, with Coop’s dear friends Michael ‘Wippa’ Wipfli and Peter Overton leading the segment with their in depth knowledge on the plight of sarcoma patients, and the cancer itself.  Peter and Wippa were faultless in their delivery, and their humanisation of the story behind the Foundation.  At the core of what we do, are the faces of sarcoma, and they are the same faces that drive us to instigate change by providing funding and awareness for this cancer.  It is therefore critical we do not lose sight of those for whom we work.

Seasoned professionals, David Campbell and Richard Wilkins were flawless as hosts, and we thank them for the very respectful way the segment was navigated.  Sarcoma is an intensely serious topic, and can be a very tricky in an interview environment.  It proved to be no hurdle for either of these polished presenters.

Finally, we want to express our gratitude to the powerhouse duo behind the scenes, Today Extra producers, Liz Adam, and Blake Dale, who had thoroughly researched the segment, and directed the piece in such a respectful and factual manner.

This important initiative would not be possible without each of these outstanding individuals who shone the spotlight on sarcoma and the inherent issues faced by patients, clinicians, families and loved ones.

Once more we find ourselves searching for words to express our gratitude to this fabulous foursome.

The production of this awareness campaign has been a labour of love based on Cooper’s vision to ask the generous public figures and celebrities in his life, to join him in creating a national awareness programme for sarcoma.

The rationale behind this was simple.  He felt no-one would listen to a “pimply faced teenager with sarcoma”, but they may listen to this high profile collective, and in doing so lives could be saved.  Early diagnosis saves lives, and awareness of this cancer is paramount to improving survival outcomes.

Sadly Coop did not live to see what his friends have produced, however we know he would be humbled by the finished result, as the passion for cause is evident from all those involved.

We would like to extend heartfelt thanks to our celebrities in no particular order Peter Overton, Jessica Rowe, Michael ‘Wippa’ Wipfli, Mia Freedman, Peter FitzSimons, Callum Mills, Jimmy Barnes and Paul Roos, for helping us shine a light on sarcoma in our national awareness campaign.  

We extend a very warm thank you to our young sarcoma survivors, Imogen Atkins and Charlii Croese for the courage and bravery they have shown in participating in this campaign. We remain in awe of your resilience and determination.

Special thanks to Rudimental and songwriter John Newman, for allowing us to use’ Not Giving In’ as our soundtrack without fees, and to the amazing and ever dependable John Watson,  Founder, Eleven:  A Music Company, and manager to Jimmy Barnes, for facilitating the process.

Finally we thank our stellar and highly talented producers, James Tindale and Kristy Everett for their outstanding work, their patience and direction, together with the ever generous Michael Cordell for the loan of equipment, George Tyler for his creativity and guidance when filming our celebrities, and to Claire Bonic for her behind the scenes help throughout filming.

Using whole-genome sequencing to research deeply into our DNA has led to the discovery that all disease is linked to genetic mutations so that instead of trying to treat disease symptoms, we can now target the mutations causing them. This is personalised medicine.  Read more about the outstanding work of the Garvan Institute, providing untold hope for sarcoma patients.

https://www.garvan.org.au/research/diseases/sarcoma/research

The sarcoma research group of the Bellvitge Biomedical Research Institute (IDIBELL), led by Dr. Òscar Martínez-Tirado, has identified a potential new therapeutic target for Ewing sarcoma, the second most frequent bone cancer in children and adolescents, and a tumour known by its aggressiveness and tendency to metastasise.

https://www.news-medical.net/news/20180405/Researchers-discover-potential-new-therapeutic-target-for-Ewing-sarcoma.aspx