Childhood Cancer Awareness Month

September 1 marks the beginning of Childhood Cancer Awareness Month 

In Australia, more than 1000 children and adolescents are diagnosed with cancer each year, while worldwide, a child is diagnosed with cancer every 2 minutes.
One in five childhood cancers is a sarcoma.  Two out of five of those diagnosed with a sarcoma will not survive. While those who survive have a one in five chance of another cancer diagnosis over a ten year period.

 
September allows us to reflect on the lives of those children living with a cancer diagnosis, those who have undergone savage treatment regimes and survived, and those who lost their lives to cancer.  Cancer leaves devastation in its wake, and this is magnified when the patient is a child


CRBF wish to acknowledge the  dedicated clinicians, surgeons, researchers, MDT’s, nursing staff, specialist hospitals, and NGO’s who support our young cancer patients, and the outstanding contribution they make in  the lives of those young patients.


Join us through September as we highlight the work of many of these remarkable individuals, who are providing untold hope for our young at their most vulnerable time.

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.

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!

July Sarcoma Awareness Month

What is the need for Sarcoma Awareness Month? 

Sarcoma is still considered to be the forgotten/neglected cancer, despite the AIHW predicting again in 2021 it would be the leading cause of cancer related death in the 10-24 year age group in Australia.

Efforts to fund research and drug development for sarcoma are more challenging due to a lack of awareness and understanding. It is difficult to raise funds for research if the community don’t know the nature of the cancer, or even worse, they have never even heard of it. 

During the 2021 Global Sarcoma Awareness Month, we aim to further highlight:
⁃ The critical need for early diagnosis,
⁃ Symptoms and ‘red flags’ to be aware of,
⁃ When you should see your medical professional, 
⁃ Your rights as a patient, and 
⁃ The need for timely referral to a specialist clinician/team.

It is also a month when we acknowledge those patients living with a sarcoma diagnosis and ongoing treatment, and those who have completed treatment and resumed their lives. And of course, remember those who tragically lost their lives to this insidious cancer.

We team once again with our colleagues from across the Nullabor, @sockittosarcoma to produce the national awareness campaign, which will include a powerful video, and our podcast season 2 – Let’s Talk More About Sarcoma.

We’d like to thank patients Mika, Margaret, Celso and Jack, along with experts Dr Antoinette Anazodo and Sarcoma Nurse Katie Thomson, for helping to create this moving yet informative piece.

We wish to thank the amazing team @by_enthral – in particular Jordan Laing & Emma Robertson for their creative direction, and for donating their time and all agency costs involved for the video. This meaningful production would not have been possible without their generosity. 

We also extend our gratitude to @cathrinemahoney and @darcymilneee for their outstanding work once more on the podcast for the second year running.

Help us this July, in spreading awareness about sarcoma, to help end the needless loss of lives.