Recognising the remarkable achievements of the outstanding women who contribute so much to advancing sarcoma, whether it be in science, medicine, allied health, a patient, parent, carer, family member, volunteer or philanthropist..
Far too many to include by image and name today.
In so many ways you each help to make the world go round for so many living with a sarcoma diagnosis.
As a collective our voices are strong.
We congratulate the stellar team at the Daniel Ferguson LGMD Foundation, launched today, the first organisation of its type in Australia to focus on Limb-Girdle Muscular Dystrophy in its pursuit of improving outcomes for those diagnosed.
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.
Fergus Mculla was a very special young man to many, staging a courageous battle with rhabdomyosarcoma, which tragically ended in August of 2021.
The team at CRBF formed a very special bond with Fergus and his remarkable family over past years, and as a result, many of us witnessed first-hand, the resilience and positivity Fergus showed throughout his treatment . No matter what life threw at him, his beautiful smile was never far away.
No matter what life threw at him, his beautiful smile was never far away. CRBF is delighted to announce the Fergus McCulla Psychological Support & Wellness Programme will be officially launched this month, and will be free of charge for all patients and families. Please press the banner to read more.
Fergus was also a voice for change whilst he underwent treatment, especially concerned about the level of formal support offered from the point of diagnosis and beyond. His courage was always evident in his ability to share his sarcoma journey on social media, helping others navigating the same pathway, and in doing so, providing support and a shoulder for many. Press to read more of this remarkable young man and the new CRBF programme named in his honour.
When it became time to name our psychological support programme, it was an obvious choice that it should bear Fergus’ name.
CRBF is delighted to announce the Fergus McCulla Psychological Support & Wellness Programme will be officially launched this month, and will be free of charge for all patients and families.
This programme will provide an additional layer to our peer support programme, and will be fully supervised by two experienced clinicians.
Please email Keith Cox, Director Patient Support at Keith.Cox@CRBF.org.au or Tania Rice-Brading Patient Support Coordinator at Taniarb@crbf.org.au should you wish to discuss or register for this programme.
Please see below a transcript of the speech delivered at the launch of the programme on Wednesday 1st December, at the Collaboration: The key to unlocking advancements in sarcoma Breakfast – delivered by Clinical Psychologist, Louise Hird.
‘My journey into the traumatic world of Sarcoma began as unexpectedly as everyone’s does. My son, George, who you many of you heard speak at the CRBF corporate breakfast a couple of years ago, was very good friends with Cooper Rice Brading. Cooper was great fun, had a wicked smile, played in the same cricket team as my son and was an avid Swans fan – he had a big future but his future also included Sarcoma. His diagnosis came out of the blue, was sudden and we all thought he would be fine. He wasn’t. We knew nothing about Sarcoma – I am not sure I had even heard of it. I now know that Cooper’s story is typical of many young Sarcoma sufferers.
My son’s relationship with Cooper and involvement with the CRBF as an ambassador for the Foundation, kept myself and my family connected to Tania, Colin and Mitch and the CRBF. Through that relationship, I have learnt a great deal about the perils of the diagnosis. More recently a dear friend who is in this room today, has been diagnosed and I have watched him and his family struggle with the same uncertainty, confusion and fear. Not only is very little known and very few treatments available but there is very little support for the individuals and their families diagnosed with sarcoma.
I am a Clinical Psychologist working in private practice. I am very aware of the lack of funding and access generally to emotional and psychological support services in the community and how difficult it can be to navigate mental health services and find access to the right service or provider. I have learnt that Sarcoma patients and their families have very particular needs. They often feel very isolated as they don’t have the same access to support groups as other Cancer sufferers. The support that they need is simply not available. Sarcoma is extremely rare and that means that a diagnosis is extremely lonely and limited research has been done in relation to the specific needs of people diagnosed with Sarcoma. This is changing thanks to our colleagues at Sock it to Sarcoma in WA.
I spoke at length with CRBF about this difficulty and began to work with my colleague Dr Lahvinya Kulaendra, a practicing psychiatrist, to develop a program that might address the very apparent gap in services available to Sarcoma sufferers. Lahvinya and I have taught together on a number of programs working to develop psychological skills in young medical students, psychologists and psychiatrists. This project presented us with some unique challenges, these were not a group of people identified because of mental health difficulties but they were a group of people very much in need of support. There is very little funding available to research and understand the scope of the unmet needs or to even clearly identify what the needs of Sarcoma patients are? And how could we fund such a service? By tapping into psychology students hoping to apply for Clinical Masters programs we found a group of people with the right skills and motivation to offer their services voluntarily. We approached the CRBF to financially support the development and delivery of a training program for the volunteers and they agreed. We selected our first group of volunteers who are all here – Merran Cunningham, Mitch Rice Brading, Nathan Salgo and Henry Foley – and so this new project began to take shape.
So many people have contributed their time voluntarily to make this new program possible. Without this collaboration and without volunteers it could never have happened.
Many thanks to Keith Cox, clinical nurse specialist whose deep knowledge and understanding of the nature and unpredicatable trajectory of Sarcoma and of the patient’s needs was invaluable; to Richard Boyle , sarcoma specialist and orthopeadic surgeon, for taking the time to teach us about the pathology, etiology and complex treatment and management of the illness, to Mandy Basson from SockItToSarcoma! who briefed us on the huge deficits in the emotional and psychological support offered to the patient’s and their families through the research her team is doing in WA.
Finally, to the patients and families who joined us at the invaluable and at times heartbreaking round table discussions. Here the patient journey was relayed, to help us understand the deficit of information available, the limited treatment options, the loneliness and the isolation of being diagnosed with a rare cancer where there is little funding and support groups are limited. And lastly many thanks to our volunteers for the amount of time they have given to this program and for their patience as the projected developed and changed.
I am very excited that we are able to launch the Fergus McCulla Psychological Support and Wellbeing Programme today. There is no doubt that there is great need in the Sarcoma community for such a program and I am very honored to have been part of this collaborative venture. I hope that with further collaboration and funding we will be able to expand not only our medical understanding of the pathology, management and complexity of sarcoma treatment but also to offer individuals with Sarcoma support as they confront their diagnosis, treatments and suffering.’
December 1, 2021. Botanic House, Royal Botanic Gardens Sydney
Not even the Omicron strain of Covid could eventually stop the “Collaboration: The key to unlocking advancements in sarcoma” breakfast from finally going ahead. After three false starts, spanning five months, 130 invited guests enjoyed a superb breakfast in the serene and picturesque surrounds of Botanic House, in the Royal Botanic Gardens Sydney. This event was a collaboration between Sock it to Sarcoma! WA and the Cooper Rice-Brading Foundation and was proudly supported by the Weinert family and the Weinert Group of Companies.
The morning began with an unusually balmy 22 degree Sydney morning, with sunshine streaming through the trees and shrubbery, encasing Botanic House. Guests arrived on time and in time to be seated and enjoy a sumptuous breakfast provided by the Trippas White Group. We would like to acknowledge Allyson Wert, from the TWG, who oversaw the smooth running of the event, and was a delight to work in the months leading up to the breakfast.
The MC for the morning was Mitchell Rice-Brading, older brother of Cooper, and the consensus is, he did an outstanding job in his new role. Mitch introduced Mandy Basson, Executive Director of SitS! who has worked tirelessly to advance sarcoma in Australia for over a decade, together with CRBF Chairman, Robert Beech- Jones. who spoke about the value of working together to advance sarcoma in Australia.
Professor Dorothy Keefe
The next speaker was Professor Dorothy Keefe, CEO of Cancer Australia, who was unable to attend the event due to a prior commitment with the Federal Minister for Health, however she took the time to record an inspiring message which resonated deeply with the audience.
Dr Cleola Anderiesz, Deputy CEO Cancer Australia
Dr Cleola Anderiesz, Deputy CEO of Cancer Australia, kindly stepped in for Professor Keefe, and held the room in the palm of her hand for the entire of her speech, her words echoing the theme of the breakfast, confirming the importance of working together to advance sarcoma.
Vale Celso Munoz
The mood of the breakfast then turned to a very sombre tone, as we each honoured the memory of Celso Munoz, who was to speak at the scheduled July event. Celso had prepared his speech, which his wife Dr Mariana Sousa had found after he passed away on October 27th, from osteosarcoma. Mariana felt Celso’s words should be heard, and they were read to our guests, and accompanied by a photographic tribute which can be viewed below.
Highly experienced and extremely personable media personality, performer and author, Gretel Killeen then took the stage to facilitate the research forum. Gretel was simply outstanding in her role, and due to ongoing AV issues with our link to Western Australia, her professionalism and experience was tested to the limit, however she remained poised and in complete control throughout. Gretel led the panel with Sock it to Sarcoma’s Dr Simon Carroll from WA, Dr Vivek Bhadri, Chris O’Brien Lifehouse, ANZSA Board member, Associate Professor David Gyorki, Peter McCallum Cancer Centre, Professor Michelle Haber AM , CCIA, Professor Glenn Marshall AM, SCH & CCIA, Professor David Thomas, GIMR & Omico, through 40 entertaining and informative minutes, with the panel sharing their innovative work and their hopes for the future of sarcoma.
It was then time for CRBF patient advocate Jack Gibson to take the stage, and to deliver such inspiring and heartfelt words, underpinning the importance and significance of hope, and providing deep insight into the past four years since his diagnosis. You could literally hear a pin drop, as Jack spoke from the heart, and courageously recounted his innermost thoughts on the the role hope plays at various intervals from diagnosis and beyond, not only for him, but for all sarcoma patients.
A tribute to Fergus McCulla
A tribute to Fergus McCulla followed. Fergus was and is a much loved member of the CRBF community, who lost his life to sarcoma in August of 2021. We were honoured to have Fergus’ family Jane, Norman and Anna, join us on the morning, and for them to be present for the launch of the Fergus McCulla Psychological Support and Wellbeing programme. Fergus was a keen and talented musician and an original song he penned and sang, was used as the basis for a photographic tribute, which you can listen to by clicking the link below.
The Fergus McCulla Psychological Support and Wellbeing Programme
Clinical Psychologist, Louise Hird, together with Psychiatrist Dr Lahvinya Kulaendra, created and incepted the psychological support programme, which will provide fully supervised emotional support, free of charge to all sarcoma patients and families nationally. Louise provided a polished overview of the programme and its purpose for our guests, thanking our graduate volunteers, Nathan Salgo, Henry Foley, Merran Cunningham, and Mitchell Rice-Brading, together with our legal team, Ross McLean and Michael Furlong for the many hours placed into the ensuring all legal requirements were met prior to its launch.
The Wipfli Family Sarcoma Research Grant
Media personality Michael “Wippa”. Wipfli, provided a lighter segment, speaking about his time on Celebrity Apprentice, and what the experience meant to him personally. Wippa on behalf of his beautiful wife Lisa, also attending the breakfast, presented a cheque to Dr Emmy Fleuren for $183,000 which represented his outstanding challenge win on Celebrity Apprentice Australia. He also presented a cheque to Molly Croft and Australian netball star, Amy Parmenter for the Tie Dye Project to aid paediatric/AYA sarcoma research in Australia.
Mr Andrew Hagger, CEO Minderoo and the Minderoo Foundation
Sock it to Sarcoma and the Cooper Rice-Brading Foundation were very excited at the prospect of having Minderoo CEO, Andrew Hagger, present to our guests on the morning. The universe did manage to throw a number of significant curved balls our way, including WA border closures, which saw Andrew willingly offer to deliver his very important words via livestream.
The gods of AV had other ideas and the instability of the live stream connection due to the current weather conditions continent wide, saw the line drop out consistently. Andrew, as a highly seasoned professional had the foresight to record his speech, however nothing it appeared was going to go well in this segment, and the taped message was not played at the event. This was so terribly disappointing not only to the two hosting organisations, but to the numerous people attending the breakfast, who had wanted to hear Andrew speak.
We wish to also recognise the time and expertise Bruce Mansfield from the Minderoo Foundation, has invested in assisting CRBF, in building strategies around his vast experience with the Brain Cancer Mission. This invaluable advice led to the joint submission with SitS! and the National Sarcoma Initiative.
We would like to extend our heartfelt thanks to Andrew Hagger and Bruce Mansfield for their high level support, and their willingness to assist both organisations in advancing sarcoma in Australia.
Our thanks to those who have made significant contributions to sarcoma in Australia
An important segment on the morning highlighted a number of significant contributions to sarcoma research over past years, including the Dr Matthew Fisher Research Fund which amassed in excess of $90,000 and was to be presented to Professor David Thomas at the scheduled July event, by Dr Fisher’s wife, Naomi Chun and his daughters, Sylvie and Vivian. Dr Fisher lost his life to rhabdomyosarcoma in January of 2021, after a relatively brief but very courageous battle with this savage sarcoma sub-type. As with each of us in the room on Wednesday, Dr Fisher and his family were and are very passionate about funding research for an eventual cure.
We also wish to mention the Wipfli Family Sarcoma Research Grant, the Daniel Allchin Race for a Cure, conducted by the Allchin family, the Fell Foundation, Running for Tom, in memory of Tom Hardyman, Vince’s Sprint for Sarcoma, The Alex Williams Memorial Fund donated by the Williams family, Dr Mariana Sousa, daughter Mia and the Salesforce team in honour of Celso Munoz, The McCulla Family in memory of Fergus Mculla, and the Weinert family & the Weinert Group of Companies. We also wish to acknowledge not only those in the room – far too numerous to mention, who have contributed enormously over past years, but also the Australian public, who have embraced this cancer, despite very few ever being personally affected.
Special thanks
Special thanks to Tom Molloy who undertook photography for the event, providing us all with some very special memories. Also to Martin Rossleigh, Siobhan Shaw, Di Lawrance and Emma Duncan for their ongoing assistance on the morning.
After a valiant three year battle against a Rhabdomyosarcoma,Tom Hulston and Rob Stein’s childhood friend Fergus McCulla, tragically passed away last month at the age of 31.
A life tragically taken too soon by this devastating disease.
Tom and Rob considered themselves to be the lucky ones to have spent some of the best moments of their lives creating wonderful memories with Fergus from the time they met at Barker College Junior School over 20 years ago.
“Fergus suffered through three years of extremely invasive surgeries, oppressive chemotherapy regimens and exhausting radiation treatments, but in a true testament to his character, he never lost his sense of humour and kindness to other people. He was always going out of his way to make sure others were ok and never once complained about the unspeakably difficult time he was going through”, Tom and Rob recently wrote.
On the 19th of September, Rob and Tom courageously ran the Copenhagen Half Marathon in Fergus’ honour. Their target was originally $2000 however when this post was published, they had raised in excess of a very impressive amount of $4000.
We would like to extend our deepest gratitude to Tom and Rob, who whilst in the depths of grief having loss of their childhood friend, ran this gruelling event to raise funds to assist those living with a sarcoma diagnosis, in Fergus’ honour.
“We will never forget you Fergus and we will forever be inspired by your courage and kindness.” (Tom Hulston and Rob Stein, September 2021)
• Phosphoproteomics explained critical targeted drug mechanism of action/resistance.
• Outcomes in personalized medicine platforms may be enhanced by phosphoproteomics.
Press the link below to read more:
https://www.sciencedirect.com/science/article/pii/S0304419X21001116
Today, on RU OK? day, we emphasise the importance of reaching out to those around you. In particular, to those who you know are going through a tough time, whether it be cancer, COVID, or life-induced.
Reaching out to someone never has to be a big deal. How good does it feel when someone tells you what a good friend you are to them? Reminding someone of this, can create the space for future conversations if they need to be had. And, it reminds them they aren’t alone.
And at CRBF, we are always here for our patients – no exceptions. We currently have an array of different support services in place, and in the not-too-distant-future, we will be able to offer even more. But for now, never hesitate to contact us through phone, email, or social media.
Checking in on those around you isn’t an annual event, but given the current climate in Australia, it’s a timely reminder.
Anya Zuber may have only been 19 when she passed away on the 12th September, 2020, but this truly remarkable young woman’s legacy will live on forever.
At age 13, Anya was diagnosed with a high-grade metastatic osteosarcoma, and would begin treatment at Westmead Children’s Hospital, where, over the next ten months, she would undergo six rounds of chemotherapy and limb-saving surgery on her leg. This was particularly difficult given Anya’s loving family live in Armidale, and were required to relocate during this time, to be by Anya’s side.
November 2015 saw the end of treatment, and Anya received the news she and her family were waiting to hear. Anya was cancer free, and able to return home in time for a much-needed family holiday at the beach, and back to Armidale in time for Christmas.
In January 2016, Anya noticed unusual bruising and a lump on her leg with tests confirming the cancer had returned. The family returned to Sydney for a further six months of intensive chemotherapy and high-dose radiation before once more being given the ‘all clear’ in August 2016.
For the coming three years Anya enjoyed a rare normal. Normal for a teenager can come in many forms – socialising with friends, being with family, and even attending school. The simple things become so important. Most adolescent patients miss the ‘their’ normal. Those things we all take for granted until they are taken away in the blink of an eye.
Anya’s treatment was overseen by eminent paediatric sarcoma specialist oncologist, Professor Stewart Kellie, at the Cancer Centre for Children- Westmead Children’s Hospital before she transferred to an adult facility, at the Chris O’Brien Lifehouse, whilst supervised by arguably the one of the best bone tumour surgeons in Australia, Dr Richard Boyle and paediatric/AYA oncologist Dr Vivek Bhadri.
In May of 2020, a recurrence of disease was found in Anya’s lungs and surgery was conducted July. In August, Anya experienced further symptoms and it was confirmed in September there was a mass in the right lung, and Anya immediately returned to Sydney.
Anya passed on 12 September 2020, surrounded by the family she loved so much.
Despite the insurmountable adversities this inspiring young woman faced, her wish was to end the devastation sarcoma leaves in its wake, and to improve treatments and survival outcomes for those walking this road behind her.
Anya’s family have worked with the Children’s Cancer Institute Australia (CCIA) over the past year to establish a research project called Anya’s Wish. They are committed to raising $600,000 over the next three years. This innovative and world-first research project will significantly improve therapies and survivability for young people diagnosed with osteosarcoma.
In Anya’s memory, funds are being raised for Children’s Cancer Institute, where in 2019, the institute began a new research program dedicated to sarcoma. Dr Emmy Fleuren head research scientist at CCIA, focuses on research developing ‘targeted therapies’ for use in children, which are not only effective at killing cancer cells, but are much less harsh than conventional chemotherapy, causing fewer side effects.
By pressing the link below you can contribute to Anya’s Wish.
https://www.ccia.org.au/blog/introducing-anyas-wish
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.