Category: Cancer community

The legacy of Dr Matthew Fisher

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In March 2020, Dr Matthew Fisher received the devastating diagnosis of rhabdomyosarcoma and embarked on one of the most grueling treatment regimens imaginable. Throughout this ordeal, his courage and resilience never faltered, and his selflessness remained boundless.

Matt is survived by his much-adored wife, Naomi, who stood as his unwavering rock, walking every step of this harrowing journey by his side. Despite the immense challenges, she skilfully balanced the demands of caring for their two precious daughters, Vivienne and Sylvie, who were aged four and one at the time.

This young family, whose seemingly perfect life was shattered by sarcoma, has imparted profound lessons. Their humility and grace in the face of adversity were extraordinary, embodying perseverance and determination each day, even when faced with little positive news. Their enduring love story is a testament to the strength of their bond and will forever be remembered.

The extended family also played crucial roles, each member stepping up to envelop Matt, Naomi, and the children in a shroud of love and care.  We learned much from witnessing the humility and grace with which Matt, Naomi, and their extended families, including his parents and sister in the UK, faced immense challenges.

Matt, a softly spoken and modest man, demonstrated extraordinary courage and resilience throughout one of the most brutal treatment regimens. During his treatment in 2020, Matt continued his work as a chemical patent examiner, researching the patents on his chemotherapy drugs and sharing his findings with his oncologist, who believed one of the drugs to be an Australian invention.

Matt’s oncologist, Associate Professor Paul Craft, is renowned for his exceptional care, compassion, and expertise. Always willing to explore all treatment options and think innovatively, Professor Craft ensured Matt’s needs were heard and promptly addressed. Matt received the highest standard of care from a clinician with both exceptional skill and a profound sense of empathy.

Professor Craft’s Nurse Coordinator, Amber, played an integral role in the outstanding Canberra team. This often-overlooked role is crucial, alleviating much of the burden from the patient and family.

The importance of early diagnosis for sarcoma patients is globally recognised and can significantly impact the disease’s trajectory. A special doctor at the Canberra Hospital emergency department, “Dr. Nick,” was unsatisfied with the initial scan results and promptly referred Matt to the sarcoma specialist multi-disciplinary team. This pivotal decision, made by a young doctor encountering a rare cancer, was crucial.

Given Matt’s scientific background, he wished to support the critical research needed to change the current trajectory for sarcoma patients. 100% of this research fund were directed to the IL-23 sarcoma sub-study at the Garvan Institute of Medical Research. This pioneering study, open to all sarcoma sub-types has provided valuable steps forward to unlocking the secrets of sarcoma.

Matt’s legacy has raised in excess of $100,000 for the IL-23 study, a truly remarkable testament to his enduring impact, generosity and his profound concern for those who would walk this road behind him.

 

9 years strong. Brendon’s fight against sarcoma

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Introducing Brendon Onorato, a husband and father of two, in the fight against myxoid liposarcoma.

Diagnosed in 2015, Brendon has faced immense challenges over the past nine years with unwavering resilience and hope. Despite the rigours of living with this relentless cancer, he continues to be immersed in his young family, maintain a positive attitude, and explore new avenues in integrative oncology after his terminal diagnosis.

Join us as Brendon candidly shares his powerful story, inspiring us all with his courage and determination.

Meet the remarkable Anne Pantazis

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Imagine at the age of  53, relishing that special time in your life when your children have spread their wings and the countless plans you have to enjoy with your life partner. Then, those dreams and more come crumbling down with the diagnosis of myxofibrosarcoma.

Over the past four and a half years, Anne Pantazis (@anne__bionica) has faced immense challenges with unwavering resilience, incredible strength, and unyielding hope. In the next 30 minutes of this interview, Anne inspires, shocks, and delights with a roller coaster of raw honesty, served with a side dish of hope and the desire to evoke change.

 

July is Sarcoma Awareness Month

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July is Sarcoma Awareness Month. While sarcoma awareness is a continuous effort, this month, the message is heightened globally.

Sarcomas are rare and aggressive cancers that can arise in the bone and soft tissue, affecting any area of the body and all age groups. These cancers are often misdiagnosed and present significant treatment challenges.

This month, we are focusing our attention on those aged 30 and above. Each of these individuals faces unique challenges related to their age and the time of their life when sarcoma entered their lives completely unannounced.

We are privileged to have many remarkable individuals whose lives have been affected by sarcoma share their stories, highlighting the unique struggles faced by those in this age group.

Today, we kick off Sarcoma Awareness Month featuring “teasers” from three remarkable women – Naomi, Kaela, and Anne, whose lives have each been changed irreversibly by a sarcoma diagnosis. The long versions of their interviews will feature throughout July, along with the stories of several men who have also lived with this cancer and have generously agreed to be interviewed.

The destructive nature of sarcomas is matched only by the frustration of those fighting them. With limited research and awareness, sarcoma remains a formidable adversary. By sharing these courageous stories, we hope to build greater awareness around this devastating cancer.

If you or a loved one suspect a sarcoma, please contact your doctor immediately to discuss.  A comprehensive list of all verified sarcoma specialists in Australia, may be obtained by going to https://www.crbf.org.au/sarcoma-multi-disciplinary-teams/ or by contacting the Australia New Zealand Sarcoma Association https://sarcoma.org.au/.

Our thanks to Mitch and Steph from  for once more going over and beyond with their work and creative direction behind the camera, and the microphone.

Special thanks to the fabulous Michael “Wippa” Wipfli” for his voiceover, and for the incredible support he provides to sarcoma in Australia.

Cancer: The Modern Plague. Prof David Thomas

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Below is a summary of Professor Thomas’s address.

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.

CRBF Mother’s Day Breakfast 2024

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Amidst a week of incessant rain in Sydney, the 10th of May dawned with a spectacular sunrise, setting the stage for the annual CRBF Mother’s Day Breakfast held at the prestigious Park Hyatt Sydney. Despite facing several challenges with technical issues and roadworks adjacent to the hotel, the event eventually unfolded.

The day kicked off with Mitch O’Connor from Qantumhaus and his partner Stef Moss arriving just as setup began, equipped with video cameras and cameras to capture every moment of the event. Mitch has been an integral part of CRBF for the past year, and we owe a debt of gratitude to him and Stef for their professionalism and easygoing nature. Their dedication to documenting the event ensures that every precious moment was preserved.

Despite the setbacks, the guests displayed remarkable patience and understanding throughout.  Their unwavering support and cooperative spirit were instrumental in keeping the event atmosphere positive and uplifting.

Our host, Melissa Hoyer, graced the stage with her unparalleled professionalism and excellent reputation as a TV and radio commentator. With her grounded demeanour and warm welcome, Melissa effortlessly guided the event back on course, setting the perfect tone for the occasion. Melissa’s presence is indispensable for gatherings like this, as she embodies the spirit of readiness, always willing to roll up her sleeves and dive headlong into any task to ensure the event’s success. Her dedication and versatility make her the perfect choice for any occasion.

The melodies that filled the air as our guests arrived were courtesy of the exceptional talents of Jarrad Sapsford and Dr. Marc Chami. These two remarkable young musicians have been integral to the event since its inception, adding a touch of musical magic that captivates the hearts of all who attend. Their musical prowess and dedication to enhancing the atmosphere have become synonymous with the CRBF Mother’s Day Breakfast, enriching the experience for guests year after year.  Both Jarrad and Marc share a special connection with the event, having attended Sydney Grammar with Cooper, further strengthening the bond between the performers and the cause. Their parents’ unwavering support for the function each year is a testament to the collective commitment to making a difference.

The Park Hyatt Sydney team, whose meticulous attention to detail and unwavering commitment ensured the success of the event. Special thanks are due to Christine Haddad, Aoife Burns, Sophie, and Can for their outstanding contributions behind the scenes. Their dedication and expertise were instrumental in orchestrating a memorable experience for all attendees.  The delectable catering options provided by the Park Hyatt Sydney team included assorted breakfast canapés and beverages were served with elegance and precision, delighting the taste buds of guests and adding an extra touch of sophistication to the occasion.

Additionally, we express our gratitude to Sarah Banks from Encore for her valuable assistance and support of the audio-visual elements for the event.

The ambiance of the Guest House at the Park Hyatt Sydney was transformed into a breathtaking display of elegance thanks to the generous contribution of cream roses by The Little Fresh Group and the Lynch family. The Lynch family’s steadfast support for the annual CRBF Mother’s Day Breakfast event and our appreciation for this gesture cannot be adequately articulated.

Each guest was treated to a beautiful gift bag, generously provided  by our sponsors.  The Sapphire Group, under the thoughtful leadership of Dr. Warwick Nettle and Ms. Nicole Eckels, graciously provided a Glasshouse Fragrances 380g candle, ensuring that every attendee could indulge in the exquisite scents of sophistication and elegance. Mrs. Angela Cattana, together with the Taylor family, continued their annual tradition of support by gifting each guest a 750ml bottle of Taylors Wines Sparkling Chardonnay, allowing them to raise a toast to the occasion with the finest of wines. And let’s not forget the stunning touch of nature provided by the talented Anthony Tang, Director of Mr. Flower Sydney, whose beautifully curated bouquet of roses added a touch of timeless beauty to the event. We extend our deepest gratitude to our generous sponsors for their unwavering support and contribution to making this event truly memorable.

The stage then belonged to Carly-Anne Evans and Michaela Leiske, who left the audience spellbound from the very first note. With flawless renditions of iconic pieces such as “When You Believe” from The Prince of Egypt and the ethereal “Duet du Fleurs” from Lakmé,  O’mio babbino caro – Puccini and Con te partiro – Francesco Sartori, they set the perfect tone for the morning’s proceedings, captivating hearts with their sublime vocals and emotional depth. Their mastery of the opera performed without microphones  truly left an indelible mark on all who were fortunate enough to witness their talent, ensuring that the evening would be remembered for years to come

Professor Michelle Haber AM, the highly respected  Director of the Children’s Cancer Institute of Australia, delivered a captivating keynote address that left a lasting impact on all attendees. With passion and expertise, Professor Haber illuminated the ground-breaking work of the Zero Children’s Cancer program, highlighting its tireless efforts to combat paediatric cancer and bring hope to countless families. Additionally, she shed light on the invaluable contributions of the sarcoma biobank program, a programme funded jointly by The Sutcliffe Family Sarcoma Research Fund and CRBF, emphasising its role in advancing research and treatment options for this challenging disease. Professor Haber’s insightful speech not only showcased her dedication to the cause but also inspired everyone present to join in the fight against childhood cancer.

Following a sumptuous breakfast, the focus shifted to a thought-provoking forum shining a spotlight on individuals living with a sarcoma diagnosis over 30, delving into the distinctive challenges they face. Carmen Scheffer, Anne Pantazis, and Edward Clark courageously shared their raw and unfiltered experiences with our guests. Hosted by the insightful Mitchell Rice-Brading, the forum provided a platform for candid discussions, fostering understanding and empathy among attendees. Their stories served as powerful reminders of resilience, strength, and the importance of support in navigating life with a sarcoma diagnosis, and in particular where children, partners and careers are also part of the equation. It was a truly impactful segment that left a lasting impression on those in the room.

Dr. Richard Boyle, Chair of the NSW Bone Tumour unit, took the stage to deliver an enthralling overview of the ground-breaking Sarcoma Australia Foundation of Excellence for surgical research into sarcoma. With passion and expertise, Dr. Boyle unveiled this innovative project, which promises to revolutionize sarcoma surgery in Australia. The Foundation’s vision is to establish a Sarcoma Surgical Research Centre that serves as a beacon of excellence, providing state-of-the-art education, research, and technological innovation to provide an innovative and cutting-edge approach to sarcoma surgery signifies a significant step forward in the fight against this challenging disease. Dr. Boyle’s riveting presentation left the audience inspired and hopeful for the future of sarcoma treatment and research in Australia.

As the event reached its lively conclusion, the tone was changed with  the roving microphone, and the antics of Mitch Rice-Brading. With no one safe from his engaging approach, he lifted the mood in the room by approaching unsuspecting guests, sparking laughter and camaraderie throughout. Among those caught up in the excitement were Carmen Scheffer and Kaela Bowman-Graham, both undergoing active treatment for sarcoma and coincidentally sharing birthdays just two days apart—Carmen’s falling on the day of the event and Kaela’s on the 12th of May.

In a heart-warming gesture, our talented opera singers took the stage once again, leading a stirring rendition of “Happy Birthday” to honour Carmen and Kaela, creating a truly unforgettable moment.  It was a touching reminder of the strength and resilience of these remarkable individuals, and a testament to the supportive community that surrounds them.

The raffle was drawn at 0845 with the winners notified on the Raffletix website and at the event.

1st Prize – Autore South Sea Pearl earrings with white diamond detail valued at $6500 generously donated by the Autore family

Winner:  Dr Maurice Guzman – NSW

2nd Prize  – A Mudgee luxury weekend getaway package generously provided  by Carm and Craig Robson, Thistle Hill Mudgee, the Dalton family, Robert Stein Winery and Vineyard, Olive a Twist, The Butcher Shop Café Mudgee, OzChoppers Mudgee, and Energy Healing Massage Mudgee valued at $3690

Winner –  Sally Veenboer  – Queensland

3rd Prize – Park Hyatt Sydney luxury overnight package generously donated by the Park Hyatt Sydney, Qantas, and Marquis by Waterford  valued at $2000

Winner- Cameron McLean – NSW

4th Prize  – Oroton Inez Luxury Leather goods Travel Package valued at $1078

Winner – Tracey Neaverson – NSW 

 Lucky door prize – 12 bottles of premium wines and a hair styling package generously donated by Kirsten Martensen-Arms and Laurent David Bowral. Valued at $650

Winner – Alex Pantazis – NSW 

Book buyers prize – $200 gift voucher for dinner/lunch at the iconic Macleay St Bistro, Potts Point.  Generously provided by Director, Phillip Fikkers

Winner -Naomi Chun – ACT 

We wish to thank our generous donors and sponsors .  Without your generosity this event would not be possible as all raffle prizes and gift bag contents are donated.

Autore Pearls

Taylors Wines

Glasshouse Fragrances

The Little Fresh Group

Mr Flower Sydney

The Park Hyatt Sydney

Secure Agility

Thistle Hill Mudgee

Macleay St Bistro

Kirsten Martensen-Arms

Laurent David

The Dalton family

 Robert Stein Winery and Vineyard

Olive a Twist

The Butcher Shop Café Mudgee

OzChoppers Mudgee

Energy Healing Massage Mudgee

We thank each of our guests for their patience with our technical hiccups, and for their love and support over many years, and for contributing  to the event in such a meaningful manner.

Special thanks to Carmen Scheffer for her outstanding work on the programme this year, whilst undergoing active treatment, together with Gloria Gapes, Dyan Comino and Runi Neilsen for their tireless help on the morning.

362 days until we do it all again.  We look forward to seeing you again in 2025!

Photo credits to Stef Moss from Visuals by Stef.

 

International Women’s Day 2024

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My name is Kaela.

I am a Mother, nurse and veteran. I was first diagnosed with synovial sarcoma in February 2020. At that time, I had just finished working in oncology and thought I had a sports injury to my right thigh, however after multiple scans – it was made apparent it was much more serious. I heard those words ‘you have cancer’ … A very rare cancer at that, even as an oncology nurse it was one that I had never heard of. I was diagnosed with stage 3 Synovial Sarcoma.

I then had emergency surgery to remove the tumour that was almost wrapping around my femoral artery.

This was followed by :
Portacath insertion (surgery no2)
40 rounds of the harshest IV chemotherapy anyone can receive (ifosfomide and doxorubicin) – to which I suffered many complications, including grade 4 chemo toxicity, grade 3 mouth ulcers, pericardial effusion, myocardial effusion, febrile neutropenia requiring hospital admissions after all bar two chemotherapy rounds, extreme fatigue, and significant weight loss down to 47kgs.
2 months of radiation therapy 5 days a week (sustaining localised burns and fatigue) I was then “cancer free” for almost two years. I was monitored closely and alternated between a PET scan and CT scan every 3 months. I was on my last scan before they were going to stretch my scans to 6 monthly ….. when I relapsed with bilateral lung metastasis.

I then underwent:
Right side VATS surgery to remove the visible tumours with a wedge resection (surgery no3)
I commenced a different IV chemotherapy (gemcitabine and docetaxael) however this was unsuccessful as when I was scanned 3 months post op, my tumours were already back.


After these findings, I was told I am now inoperable and began an oral chemotherapy called Pazopanib (votrient) to which I take every single day. I heavily advocated for myself to have more surgery – just to try (especially given the genetic testing showed no clinical trials were a match). After pleading my case and advocating to my multidisciplinary team about wanting more surgery (given my healthcare knowledge really helped here) – I was told if I take pazopanib for 3 months and it keeps the tumours stable, that they would consider operating. My 3 monthly scans showed the pazopanib was effective, I begged for surgery once again and they listened. I then had:
Left side VATS surgery (surgery no4) to remove the sole tumour via a wedge resection.
Right side thoracotomy (surgery no5) with lower lobectomy (resulting in a 5 night ICU stay as my left lung collapsed and I required an extra drain for support).


Since then I have continued taking my oral chemo every day and will do until told otherwise. My last scan at the beginning of 2024 showed no evidence of disease. I now work as a nurse in the emergency department. One of my biggest passions is raising awareness for sarcoma. I also love educating about clinical situations relating to oncology and advocating, given my unique experience of being a cancer patient as well as an oncology nurse and now an emergency nurse – which is why I started my Instagram account called Sorareity, where people can hear about my story, education about sarcoma and oncology related conditions as well as finding a community they feel safe in.

The Dr Matthew Fisher Sarcoma Research Fund

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Tuesday 27 February was a very special day for the friends and family of Dr Matthew Fisher, a day when Dr Maya Kansara from the Garvan Institute of Medical Research presented the preliminary findings of the IL23 sarcoma sub study at a hybrid  event attended by 110 international and local guests. 

It was particularly touching to have the Canberra Sarcoma MDT take time out of their busy schedules to attend the function, with Matt’s oncologist A/Professor Paul Craft attending in person and Ms Amber Wilson, the Sarcoma Specialist Nurse dialling in. 

The sarcoma research  fund bearing Matt’s name had significantly contributed to funding the IL23 trial through CRBF.

Matt was first and foremost a doting husband to wife Naomi,  and a much loved  father to Vivienne and Sylvie.  He was also  an avid sailor, a culinary expert, and a passionate and highly talented scientist working with the government agency, IP Australia.

It was Matt’s colleagues at IP Australia who arranged a GoFundMe page to raise funds for he and his family after his shock diagnosis with rhabdomyosarcoma..  Matt however was adamant this funds be directed to clinical research for sarcoma, and within a short space of time a remarkable $100k had been amassed by family, friends and his colleagues at IP Australia.  

This outstanding result included a $30k donation from the family and friends of Alex Rodham  who was diagnosed with soft tissue sarcoma, and passed away one month after Matt,  Alex’s family from Bungendore, were determined to raise funds for others experiencing adversity in their community and to improve the lives of those living with sarcoma. The fund was also significantly supported by the Minty family from Canberra whose son Zac had also been diagnosed with sarcoma.  

As we continue to honour Matt’s legacy, let’s pledge to keep his passion alive and strive towards a future where sarcoma becomes a treatable cancer.   This incredible achievement is a beacon of hope for those living with this disease and a testament to the power of loved ones and an amazing community.

Matt’s family will continue to raise money for his fund when the opportunity arises. His parents recently topped up the fund to make it $100,000, and Naomi’s cousin, Louisa shaved her hair in October 2022 and raised almost $5000 for her efforts.

Special thanks to:

Dr Maya Kansara for the wonderful and insightful presentation.

Ms Kylie Bryant for the beautiful introduction and for her flawless work as MC for the event

Cassandra Mitchell and her team at IP Australia for event and venue organisation and Cassandra for closing the presentation

Senior Executives at IP Australia for supporting the event

IT and event support team at IP Australia

Associate Professor Paul Craft and Ms Amber Wilson from the Sarcoma MDT, The Canberra Hospital

The Minty family from Bricks and Smiles, The Zac Minty Legacy Project

Dr Mariana Sousa

Matt and Naomi‘s family, friends and colleagues, some travelling from interstate

International Childhood Cancer Day 2024

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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. “

We urge you to support this outstanding initiative by going to www.bricksandsmiles.org

Gibbo’s Long Lunch to aid the JGSP&FP

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Under a radiant sun and against a backdrop of lush emerald-green paddocks embracing the sparkling Manning River, Mansfield on the Manning became the canvas for a five-hour lunch experience like no other on Saturday, November 11th.

Hosted by the Gibson family, 220 invited guests gathered for a very special event.  “Gibbo’s Long Lunch” was held in memory of a remarkable young man.  A much loved son and brother, Jack Gibson. The event also served as a testament to Jack’s memory, legacy, and support for the Jack Gibson Sarcoma Patient & Family Support Programme (JGSP&FSP). On the eve of what would have been Jack’s 27th birthday, love filled the air, transcending into tangible moments shared amongst attendees.

Suzie, Jack’s mums’ poignant opening speech echoed the sentiment that “Jack brought people together,” setting the tone for a day where cherished memories were exchanged and new bonds were formed. The event surpassed expectations by raising an impressive initial figure of $250k,(and rising) a testament to the enduring impact of Jack’s story.

The Master of Ceremonies for the day was long-standing CRBF ambassador, co-host of the highly successful Fitzy, Wippa & Kate Breakfast Show on Nova FM radio, and Australian media personality, Michael “Wippa” Wipfli, who never disappoints with his unique brand of sincerity, warmth, professionalism & humour.  On the day Wippa managed to not only MC the event, but to slip out between sets, to secure two highly coveted Taylor Swift tickets on the day for auction.   These are concert tickets that sold out in less than 40 minutes of being released, and simply cannot be found, much less purchased.

Words cannot articulate our heartfelt thanks to Wippa for his monumental effort on Saturday in memory of Jack, and for the incredible work he has done for many years providing untold hope to those living with sarcoma. 

Suzie’s moving speech preceded a heartfelt video tribute covering Jack’s 26 years, evoking laughter amidst tears and encapsulating Jack’s essence.

Brother Harry and sister Lily, were simply flawless, as they took us on an emotional roller coaster, recounting so many precious, and often very funny memories of their big brother, while Neil, the patriarch of the family, delivered an impassioned speech impressing the importance of Jack’s Programme, and what it will mean to others walking this road behind him.

Mitchell Rice-Brading, CRBF’s patient support co-ordinator, spoke from the heart covering the evolution of JGSP&FSP, and Jack’s pivotal role in its formative phase, adding a stirring quote from nurse, veteran and sarcoma patient, Kaela Graham-Bowman who generously shared her raw and unfiltered thoughts on what it is really like to live with sarcoma.

Jack’s dear friend, Vince Umbers delivered a stirring and deeply moving musical tribute to Jack, as he did one year prior in the very same setting.  The lyrics of this magnificent song resonated deeply.

Angus Joyce superbly hosted a Jack-centric trivia, and Henry Clarke of Sydney University Cricket Club provided extremely entertaining insights into Jack’s cricketing prowess. Hunter Hordern and Lachie Mactier hosted a lively hole-in-one competition, encouraging the competitive golfing spirit in the room. Alex Grant and Harry Gibson rallied the troops for the races, and bidding was fierce.

Behind the scenes, Suzie, Neil, Harry, and Lily, alongside Anna and Geoff , Georgia,  Emma, Will, Kimberly , Tom, Amelia, Sally, Peter, Sandy, Stu, Cath, Nicky, Jen, Kim Alex, Meg, Rob, Shiv, Lachie and Lindy played instrumental roles from arranging flowers to photography, food prep, video production, catering, and everything in between.

Auction and raffle items for the event were premium offerings, ranging from 18 holes of golf for four at NSW Golf Club with Australian Cricket Captain, Pat Cummins, who generously supported this event.  The Racklyeft family donated 2 weeks at their ski lodge in Big White, British Columbia.  A superb Noosa package was donated by the Hordern and Marlow families; A Potts Point Experience, a luxury pamper package, a weekend at Manning on the Mansfield for 18, and an exquisite Prada handbag donated by Prada Executive Sophie Clark, which found a home with the very popular Sally Mactier.

Special thanks must go to Chrissy Hordern and Siobhan (Shiv) Shaw – Chrissy for her outstanding work in securing the best array of prizes and auction items seen at a charity event in a long time.  Shiv spent countless hours producing flawless work to market the items. Together Chrissy and Shiv made a very significant $100k contribution to the impressive fundraising total. 

Thanks must also go to Emma Duncan for her great work with the mammoth task of AV/IT, and Tom Molloy for capturing the essence of the day with his beautiful photography.

Finally events such as this one are not possible without the profound generosity of donors.                                                 

Avondale Golf ClubRock Salt Noosa
Camperdown Cellars Ross Hill Wines, Orange
Champion Sports (Bushnell) Scarborough Wine Co
China DinerSony Pictures Releasing
Cricket AustraliaSun Mountain Sports
Glasshouse Fragrances Teed up Golf
Hotel Challis Potts PointThe Chapman Family, Palm Beach
Hugo’s Manly The Dinner Ladies
Human Nurture Rose BayThe Dreverman Family, Bowral
Joh Bailey Salon The Holden Family, Blueys Beach
Locale Restaurant & Bar NoosaThe Hordern Family, Noosa
Macleay on Manning, Potts PointThe Marlow Family, Noosa
Macleay St Bistro, Potts PointThe Purbrick Family
Michael Smythe PGAThe Racklyeft Family, Big White
Prada Australia – Sophie ClarkThe Rice-Brading Family
Potts Point BookshopThe Vintage, Hunter Valley
Ricky’s River Bar and Restaurant Noosa

In celebrating Jack’s life, the “Gibbo’s Long Lunch” became a tapestry of shared experiences, a testament to the enduring impact of a young man who brought people together and left an indelible mark on the hearts of all who knew him.

Let’s all raise our glasses to the very essence of Jack and his remarkable family….