Registrations are now open for the 2024 Sarcoma Symposium.
November 8th
Kerry Packer Theatre,
Royal Prince Alfred Hospital,
Missenden Road,
Camperdown
1:00 PM to 5:30 PM.
This is a hybrid event, and if you are unable to attend in person you are welcome to contribute online.
There will be an open forum, an expert panel of both those living with sarcoma, carers and sarcoma clinicians at approximately 2.20. The audience is encouraged to participate via Slido as the aim is to have as many perspectives as there are people wishing to provide them.
Topics for discussion this year:
Should genomic screening form part of a standard of care for all sarcoma patients? Why? When should it occur? Will this change the treatment plan?
Should information about all relevant clinical trials be provided to patients at the time of diagnosis? How? By who? Where should this be available? In what format? Why?
How can we as a collective enhance community awareness of sarcoma to help reduce the instance of misdiagnosis?
What education is needed? For who in particular? allied health, GP’s Physiotherapists, dentists etc? How do we do this? forums, webinars. brochures?
What are the most important elements of support from the moment of diagnosis from a patient/family perspective?
Who should provide that support? How can we use technology to enhance the support provided? Would a similar model to that of the McGrath Breast Care Nurses work for sarcoma? Why?
We look forward to welcoming you on the 8th, and to provide you with an event which encourages networking and open, robust discussion for those living with sarcoma.
All clinicians, researchers, carers, family, patients, allied health professionals and those volunteering with sarcoma working are invited to attend the day, and to have their voices heard. Please feel free to share this link.
Should you be attending in person, please refer to the attachment and follow directions on the link provided.
Should you be travelling from interstate or a remote/regional area, please advise Tania Rice-Brading taniarb@crbf.org.au no later than the 29th October, 2024.
Should you have any specific questions or need further assistance with the content included in Professor Thomas’s address, the original may be accessed in the video below, or feel free to contact me directly at taniarb@crbf.org.au
June 26th, Rare Cancers Day saw Rare Cancers Australia (RCA) and Omico Australia collaborate to host an address at the National Press Club by Professor David Thomas. The address, titled “Cancer: The Modern Plague,” underscored the pressing need for accessible, personalised therapeutics in cancer treatment.
Professor David Thomas: A Visionary Approach
Professor David Thomas, the Chief Science and Strategy Officer of Omico, founded the organisation in 2019. He has been instrumental in translating cutting-edge technologies into practical therapeutic advancements for cancer patients. With over 260 research publications and numerous papers in high-impact journals, Professor Thomas has received international recognition for his contributions to oncology. His vision is to ensure equitable, sustainable, and affordable access to precision oncology for all Australians diagnosed with cancer.
Rare Cancers Australia: A Mission of Support and Advocacy
RCA, under the leadership of CEO Christine Cockburn, is dedicated to improving the lives and health outcomes of Australians with rare, less common, and complex cancers. RCA believes no Australian should face their cancer journey alone and provides personalised support while advocating for better access, affordability, and quality of care.
Genomics and the Future of Cancer Treatment
Cancer is caused by genetic mutations in human DNA, and genomics plays a critical role in reading DNA and mapping cell mutations. This molecular understanding enables the identification of unique tumour codes and the development of targeted therapies. Historically, the last significant advance in the understanding of cancer was the mid-19th century introduction of the light microscope, which could identify cell makeup but not the molecular drivers of cancer. Genomics now offers the potential to identify deranged cells, leading to a significantly greater understanding and subsequently new drug targets.
Cancer Statistics and the Growing Burden of Rare Cancers
Australia sees 150,000 cancer diagnoses each year, equating to one diagnosis every ten minutes, and 135 cancer-related deaths daily.
In 2024, it is projected that rare cancer diagnoses will reach 18,000, making it the third most common cancer collective after prostate and breast cancer. Tragically, 7,000 Australians are expected to die from rare cancers in 2024, second only to lung cancer.
Globally, rare cancers claim a life every 45 seconds.
The Role of Genomics and Targeted Therapies
The integration of genomics into cancer treatment has revolutionised the identification of drug targets and the development of personalised therapies. These advancements are especially crucial for rare cancer patients, as they offer targeted and more effective treatment options. However, the benefits of these cutting-edge therapies can only be realised if patients can access them without delay.
The Critical Nature of Time for Rare Cancer Patients in Accessing Clinical Trials
Time is of the essence for rare cancer patients seeking access to clinical trials. These patients often face aggressive and rapidly progressing diseases, making timely access to innovative treatments not just beneficial, but potentially life-saving. The journey to access clinical trials is fraught with delays and barriers that can have devastating consequences for patients and their families. These come in the form of the urgency attached due to the aggressive nature of their cancer, lengthy approval processes, and barriers to participation.
Advancements in Early-Phase Trials
20 years ago, sarcoma patients would enter into early phase clinical trials, and response rates would 1 in 20. Today, thanks to genomic profiling, an early phase trial of a new drug can be targeted at specific patients which improves outcomes to produce a 1 in 3 response rate.
These advancements highlight the transformative potential of new treatments with timely access.
It can take up to 18 months for new therapies to become accessible and equitable. Many patients may read about new advances, however the tragic reality is many die waiting to access these trials.
To capitalise on the potential of the improved outcomes with access to trials being targeted with genomic profiling we need to speed access to trials and new therapies.
A good example of this is the use of Doxorubicin, which is considered gold standard treatment for soft tissue sarcomas, and has been used since the 1970’s. As a monotherapy it has a low response rate. It is therefore reasonable to suggest that with matched therapies leveraging genomics and targeted treatment, better results may be achieved than with the use of our current best standard of care for Soft Tissue Sarcoma.
Advancements in Pan-Tumour Drug Treatments
There has been a notable increase in pan-tumour drug treatments, which are therapies designed to target common genetic mutations found across multiple types of cancer, rather than being specific to one particular type of cancer. These treatments represent a significant advancement in the field of oncology, offering broad-spectrum results that can benefit a wide range of patients. Currently, there are seven such treatments, with projections suggesting this number will triple by 2030.
Equitable Access and Policy Change
To address these urgent needs, there must be a concerted effort to streamline approval processes and remove barriers to clinical trial participation. Policies that expedite the Health Technology Assessment (HTA) processes, similar to those achieved during the COVID-19 pandemic, can ensure that life-saving therapies reach patients faster. Equitable access to clinical trials should be a standard of care, with concerted efforts to always identify the specific challenges of patients from rural and remote areas, and the Aboriginal Torres Strait Islander community.
Covid 19 and Expedited HTA Approval
Since 2020, rare cancers have claimed as many lives as COVID-19, and often disproportionately affecting our younger population. The expedition of treatment options through Health Technology Assessment (HTA) approval during the COVID-19 pandemic demonstrated that rapid advancements in medical treatments are possible. This experience underscores the urgent need to streamline the approval processes for cancer treatments to ensure that patients receive timely and equitable access to life-saving therapies.
Government Investment in Rare Cancers
The Australian government has invested heavily in the research programs of Omico and sister childhood research programme, ZERO through the CCIA, to support the provision of research, genomics and novel treatments in a sustainable and equitable manner for all Australians.
Over the past year, Omico and ZERO have supported 53 clinical trials, identifying effective drug targets in one-third of participants. Over eight years, these programmes have enrolled over 15,000 patients with incurable cancers
Conclusion
For rare cancer patients, every moment counts. The critical nature of time in accessing clinical trials cannot be overstated. By expediting approval processes, increasing awareness, and reducing barriers to participation, we can provide these patients with the best possible chance to benefit from the latest advancements in cancer treatment. The goal is to make cancer a manageable disease, one that patients can live with and thrive despite, rather than a death sentence dictated by the availability of time-sensitive therapies.
Professor Thomas and his team, together with Christine Cockburn and the RCA team are working together to emphasise the need to expedite processes through the Health Technology Assessment (HTA) as they were through Covid 19, to ensure rapid and equitable access to clinical trials and personalised therapies. Their goal is to transform cancer from a fatal disease into a manageable condition, enabling patients to live, manage, and thrive despite their diagnosis.
International Childhood Cancer Day (ICCD) 2024Awareness around childhood cancer is never limited to one day, however on this day each year, we pause to recognise the needs and challenges of young cancer patients & survivors worldwide. It is also a day where we honour the cherished memories of those whose lives have been lost.
Approx 40,000 children/adolescents worldwide are diagnosed with cancer each year, & 1000 of these are Australian. Concerningly, three of these children will lose their lives weekly to cancer. Despite significant advancements in medical research & treatment options, young cancer patients still face immense challenges & the impact extends far beyond those diagnosed.
ICCD serves as a poignant reminder of the urgency required to address unique challenges faced by children with cancer; a celebration of progress made in paediatric oncology; & renewed commitment to equitable access to quality care & support for all children affected by cancer. This day also recognises & highlights those who through unimaginable adversity, continue to make a profound difference in the lives of others.
One such family, is that of Zac Minty diagnosed with rhabdomyosarcoma at the age of eight – they are a shining example of resilience, courage, & strength, much like Zac himself.
Bricks & Smiles: the Zac Minty Legacy Project, was established by this remarkable family in honour Zac, who passed away aged 11. LEGO was important to Zac whilst undergoing treatment as it provided “a pastime, a rehab tool, a challenge, and an escape.” Despite his very young age, he aimed to support other kids going through cancer treatment by providing the opportunity to pick out their dream LEGO sets. He also wanted to help find a cure for cancer.
Bricks & Smiles directs fund to: Providing kids undergoing oncology treatment a $400 grant to pick out their dream LEGO set(s); Australian paediatric/AYA sarcoma research (including clinical trials)
In honour of Zak & in recognition of the outstanding work undertaken by his family to ease the burden on other children, CRBF will double all donations made to Bricks and Smiles (up to $2000) To donate or read more go to the link in our bio
In Zac’s family’s words:
“Zac was 8 when he was diagnosed with Rhabdomyosarcoma in the orbit of his left eye. He bravely fought for almost 3 years, passing away in 2022, just after turning 11. He was in year 6 at the time.
Zac was an aspiring soccer goal keeper, a mad Liverpool FC fan and a kind, generous, thoughtful kid – a beautiful soul. He gave so much to us, he had so much more to give – but sarcoma took that away. He stoically battled through some incredibly harrowing treatment, always putting on a brave face and anxious to look out for those caring for him.
Our family set up Bricks & Smiles in Zac’s name. He loved doing LEGO through his treatment, it was an escape and an opportunity to feel in control in a world where so much was out of his control due to cancer. He would do LEGO on the hospital ward, at Ronald McDonald House, or at home – there was always something on the go. With Bricks & Smiles, kids undergoing oncology treatment can apply for a grant to pick out their dream LEGO sets. They can build them where and when they like.
It brought Zac joy to create, and it’s bringing other kids joy as they fight so hard against this cruel disease. Bricks & Smiles has also been able to make a contribution to sarcoma research and will continue to do so – we must all work together towards a cure for sarcoma and other cancers. No less.
Zac’s grandma Mary-Lou holds a cake stall every two weeks to raise money, zac’s mum and friends had their community sponsor their City to Surf run, Zac’s dad does the Bricks & Smiles website and his brother Elliott brought the school onboard to do SRC do fundraisers. Through all these little bits and pieces we stand up to cancer in Zac’s name. Granting the LEGO is us standing with other kids going through hard treatment. Bricks & Smiles also support the incredible work of researchers looking for a cure.
On Zac’s birthday his family will gather together at Ronald McDonald House to sponsor and prepare a ‘Meal from the Heart’ in Zac’s name. This is a great initiative that community and corporate groups can support families staying at the house by cooking and serving a meal for them. Zac and family spent almost 270 nights at RMDH through his treatment and his family benefited from so many Meals from the Heart. Even when Zac wasn’t able to eat much he loved the Meals from the Heart nights, as it made everyone’s life easier. It made us all feel nourished as well as full.
International Childhood Cancer Day is a day to support the children and adolescents that are battling cancer and their families, carers and communities. It is a day to support the amazing work of clinicians, medical and allied health staff, and medical researchers. It’s a day to commit to keep fighting this fight until we have a cure for childhood cancer. “
The virtual & in person audience comprised of those living with sarcoma, families, bereaved family & carers, clinicians, researchers, local & fed government, allied health professionals & everyone in between. The event provided a platform for each to be heard, & to share more about this insidious cancer.
The idea was that of CEO, Sydney Local Health District, Dr Teresa Anderson AM, and her stellar team led by Chief of Staff, Hannah Storey, & marked the first step forward in moving the dial for sarcoma in NSW, & nationally.
The MC for the event was veteran media presenter & cancer advocate, Julie McCrossin OAM, whose execution was flawless. Julie was entertaining & brought much needed humour to an otherwise very dark topic by her unpredictability, & the ability to think on her feet. It was a tough job, & it was done to perfection.
An outstanding line-up of presenters covered an immense body of topics & gave inspiring & highly informative presentations.
However, it was those who live the devastation of sarcoma who ultimately made the greatest impact. It is an unspeakably tough job to relive that passage of life irreversibly changed by sarcoma, however these brave, articulate individuals provided raw & honest accounts of their individual experiences.
We extend our heartfelt gratitude to the attendees, many of whom travelled significant distances to be there, & many of whom are at differing stages in the sarcoma timeline.
Clinicians/researchers/allied health professionals took time out of their schedules to support the event & to come together with other members of this small, but powerful community.
Our infinite thanks goes to the panellists & speakers – Dr Teresa Anderson AM, Uncle Allen Madden, Julie McCrossin OAM, Drs Richard Boyle, Dan Franks, & Maurice Guzman, Neil Gibson, Rebecca Minty, Louise Hird, A/Profs Antoinette Anazodo OAM, Peter Grimison, & Wayne Nicholls, Emma Pechey, Neema Rajak, Kaela Graham-Bowman, Karen & Imogen Atkins, Mandy Basson, Emma Pechey, James Parr, A/Prof Rooshdiya Karim, Dr’s Emily Davidson, Isobelle Smith, & Aneesh Dave.
When you are diagnosed with sarcoma, your world changes in the blink of an eye. Life is suddenly filled with extreme angst and the unknown.
Our Patient Support Advocate, the late Jack Gibson knew this feeling all too well, and it was Jack who spent hours of his time thinking about those things that made a difference throughout his treatment.
With the exception of the rug he loved to take with him during his visits to hospital,(which we are yet to source) we have put together kits that reflect comfort, a little luxury and practicality. Kits that provide momentary joy to those living with a sarcoma diagnosis.
Woolen beanies, lip balm by moogoo, skin products crafted for those going through cancer treatment from Scout Cosmetics, exquisite product from Glasshouse Fragrances, silk eye masks and sleepwear from Peter Alexander Sleepwear, The Tie Dye Project long and short sleeve apparel, silk/ satin pillow covers, are provided in the standard kit .
Kits are tailored to the needs of each patient, and we cater for all ages and gender.
We can only do this because of the exceptional generosity of the partners we have in place for this very important project. Their participation and willingness to support our work has enabled this programme to expand exponentially over the past five years.
Suffice to say, this would not be possible without their support.
The life that once was, and the love that will always be.
Always and forever…
Our family extends our heartfelt thanks to Professor Glenn Marshall AM, talented artist, and eminent paediatric oncologist at the Children’s Hospital Randwick, Director of the Kids Cancer Alliance, and Head of Molecular Carcinogenic Program and Translational Research at the CCIS for capturing Cooper as he would wish to be remembered on his 24th birthday.
This magnificent painting which forms part of Prof Marshalls series “boy to man…” portrays Cooper as an 11 year old captaining the SEJCA representative cricket side, and in the foreground as a 16 year old playing T20 for the Sydney Grammar 1st X1 shortly before his sarcoma diagnosis. (Original photos attached)
It is with the heaviest of hearts that we share the passing of yet another very special young man – Jordan Stockman.
Jordan was diagnosed with metastatic Ewing sarcoma days after his 25th birthday in August of 2021, and staged a very courageous and public battle, using his sizeable social media following to raise awareness of sarcoma, despite the great personal adversity he lived daily. He was determined to use whatever he had at his disposal to move the dial, and to ensure others his age understood the sinister nature of sarcoma in an effort to promote early diagnosis.
When meeting Jordan face to face he was surprisingly different from his social media persona. He was a gently spoken and considered young man, and his notoriety in the fashion world, and on TiK Tok failed to change his grace and humility, and in particular, the undeniable love he had for his family.
Jordan was one of six children to doting parents, Ahuaiti and Darrin Stockman. You could walk the earth, and never find a more loving, and more genuinely cohesive family.
In an unimaginable and deeply cruel twist of fate, Jordan lost his beloved mum to pancreatic cancer only eight short weeks ago.
Jordan’s story is a strong reminder of so much. The fragility of life, the inequity of tragedy, the importance of making each moment count, but most of all, how love and family prevails over all.
We send our love and strength to Darrin, Corey, Jovan, Cullen, Kaelis and little sister Kye-Jana.
Rest in peace Jordan. You will always be one in a million.
If you would like to provide financial assistance to Jordan’s family you can go to link in Bio, or for an offer of practical assistance, please contact Tania Rice-Brading via DM on our socials or email taniarb@crbf.org.au. Tributes may be left on our social media, which will be collated and sent to the family.
There is no better way to see 2022 out, than providing hope for the future to all those living with a sarcoma diagnosis.
We are honoured to announce CRBF was the nominated charity for the annual Macquarie Group Banking and Financial Services (BFS) Trivia Night. This is a staff event organised by volunteers within BFS to support philanthropic causes.
The event commenced with a CRBF sarcoma awareness video containing snippets of the speech Cooper Rice-Brading delivered to 250 guests at the launch of CRBF in March of 2017, using the platform to highlight the insidious nature of the disease, together with the severe lack of awareness in the community, and the dire lack of funding sarcoma receives.
Through the event, Macquarie staff raised over $173,000 for CRBF, a truly remarkable effort which will contribute to sarcoma specific clinical research and patient support in Australia. This will be allocated to two very exciting high level projects to commence in early 2023.
Our thanks cannot be adequately articulated to all of the Macquarie BFS staff who participated and their immense generosity. This event would not have been possible without the organisational skills of the Macquarie BFS volunteers who organised the event in support of CRBF. Special thanks must go to Cooper’s school friend Mark Yam, together with Avantika Pratap, Georgia and Maddie Waites who worked diligently behind the scenes to ensure the resounding success of the event.
As the sun sets on 2022, we take this opportunity to wish each of our supporters the promise of hope, good health and happiness in 2023. The work we do for those living with a sarcoma diagnosis would not be possible without your ongoing support and generosity.
On November 17, four remarkable young men, each with a strong personal connection to sarcoma, hosted the Swing for Sarcoma corporate golf day.
Ed Clark, Tim Telan, Patrick (Pat) Nekkan and Simon Danieletto are lifelong friends, and young professionals, who now have partners and young families, yet despite their personal and professional commitments, put their heart and soul, together with countless hours into ensuring the success of this event. Our gratitude to Ed, Tim, Pat and SImon together with their partners, is difficult to articulate.
The work that goes into an event of this magnitude is immense, yet somehow this outstanding group of young men managed to produce a day which will be etched in the memory of those attending for many years to come.
The day was picture perfect, the event flawless, the Mt Broughton Golf Course simply superb, and those participating were outstanding.
Despite the fact there was no collusion with the final tally, the eventual winners of the inaugural Swing for Sarcoma cup were Pontoon Bar Darling Harbour team led by owner Mark Swadling, who has loyally supported CRBF and our work with sarcoma from the day we set out to instigate change.
This event would not be possible without the generosity of sponsors, far too numerous to mention, each appearing in the attached video. If you have the opportunity to support these generous individuals and donors, we ask that you do.
A very special mention to the fabulous Adrienne and Peter Glass and to the big-hearted Craig Hodges for their immense generosity in donating luxury stays at their respective holiday homes as auction prizes, which do not appear in the programme.
