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.

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

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. 

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/

When thank you is never enough…

Wippa and his beautiful wife Lisa, sons Ted and Jack with sister Francesca

Australian media heavywieght and Nova radio host Michael “Wippa” Wipfli and highly accomplished media public relations executive Cathrine Mahoney came into Cooper’s life at a time when he was not keen on letting the outside world in.

He had very little time for anyone outside his inner sanctum of precious few people beyond immediate family.

Cooper’s condition had been deteriorating swiftly and savagely, and the outside world, even those closest to him throughout his brief life, were shut out. He did this to protect his friends. He wanted their memories of him to be positive, and not what he had become at the hands of sarcoma.

The exception to the rule were ‘Cath’ and ‘Wippa.’ Both very quickly became part of Cooper’s circle of trust and an extension of family.

Coop had a strong nose for genuine people and throughout the 18months from diagnosis to treatment, he ran his own race. He did not want to become the “boy with cancer” that elicited pity, he was hellbent on being the survivor, so becoming a token cancer patient for someone else’s personal gain, was never on the cards. He had avoided those who sought his company for pity, causing offence to some, but always sticking to his moral compass. He learned very early in the piece – Cath and Wippa were the real deal.

Both made Cooper laugh and times spent with them individually or together, were highpoints for Coops. Quality time spent with him away from cameras and media, resulted in a surprisingly strong bond and swift bond forming between the three. Unique as it was special. Each brought unbridled joy to his life when little else could.

Unsurprisingly, Cath and Wippa’s lives were impacted greatly with the news of Cooper’s passing, and from where our family stood, we couldn’t have blamed them for closing the door, and moving on. But neither chose to.

Instead, both continued with unwavering love and support for our family, at a time when we were at our lowest ebb. As a special aside, it wasn’t long before their respective families also became part of our lives, extending that very special bond, and providing enormous comfort through a myriad of highs and lows.

As we fast approach four years without Coop, Cath, Wippa and their families remain firmly by our sides. These remarkable friends continue to step up and do what they can to preserve Cooper’s legacy.

We have called on Cath and Wippa so often to assist with various projects along the way, and never once have they faltered.

Last year, both participated in the ground-breaking podcast series “Lets talk about sarcoma”, incepted and produced by Cath, giving up hours of their time and expertise to craft a finished product that resulted in a global distribution, and a meaningful tool for patients and families. Neither would accept payment in any form. Yet another labour of love, but one that held so much gravity.

Only two weeks ago, Cath and the highly talented Sarah McGilvray, who appears side by side with Wippa on the highly rating Fitzy and Wippa breakfast show, together with her role as co-creator of the very successful Nova production, “Not another parenting podcast’ performed for our guests at the annual CRBF Mother’s Day Breakfast, braving the Covid issues at the time, delivering a flawless and hysterical segment on parenting.

Which brings us to the announcement tonight.

Late last year, an unexpected call from Wippa advised us, albeit confidentially, he was going to take the Foundation with him onto the forthcoming Celebrity Apprentice Australia as his charity of choice. We were simply lost for words, and deeply humbled. We are a relatively new charity (4 years registered) and despite the high-profile charities Wippa could have chosen, he opted to choose the Cooper Rice-Brading Foundation, providing us with the opportunity of a life-time.

Filming for the Celebrity Apprentice Australia was incredibly rigorous over six days, and Wippa continued to burn the candle at both ends while filming took place, continuing is turning up each morning for a 6am start on his highly successful breakfast show, whilst also creating pilots for his production company.

This unspeakably difficult schedule did not only impact Wippa, but his wife Lisa, who was unwavering in her support. So many sacrifices were made by this family over the many weeks of filming, and for this reason, it is nigh on impossible to express our gratitude to Lisa, who at the time found herself juggling two children under the age of 5 and a new baby.

Tonight we have all watched on as Wippa’s dedication to advancing sarcoma, his bloody mindedness to ensure a win at all costs attitude, and never ending perpetuation of his very special friendship with Cooper, resulting in a win of enormous proportions. Funds that will make a quantifiable difference in the lives of the patients who are currently living without further treatment options.

We are thoroughly delighted to announce, Wippa’s outstanding efforts will be directed to supporting patients and families living with a sarcoma diagnosis, and toward the funding of a pivotal paediatric phosphoporteomic sarcoma specific clinical study through the Zero Children’s Cancer Programme, which will be named the Wipfli Family Sarcoma Research Grant.  This funding will support the Sarcoma Research Laboratory of Dr. Emmy Fleuren at Children’s Cancer Institute. Funds will be allocated to identify activated (phosphorylated) targets in sarcoma patients not covered in any other project, and will build the laboratory evidence needed to ultimately transform research findings and clinical recommendations.

It is impossible to articulate our thanks to Wippa, his beautiful family, for an opportunity which is rarely granted to a charity in its formative phases. This funding will provide the very real possibility of saving young lives, and will start a much needed conversation about sarcoma.

How blessed are we that Cooper left us the gift of friendship with his two special friends and their extended families?

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