The Dr Matthew Fisher Sarcoma Research Fund

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

Sarcoma Summit Sydney 2023

2023 Sarcoma Summit

22 September

Kerry Packer Theatre RPA, Sydney. 

A day emblematic of hope for the future.

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.

2023 Sarcoma Summit A4 Booklet Digital

Identification of sarcoma predisposition.

Three weeks into 2023, the stellar team at the Garvan Institute of Medical Research, Omico and UNSW, led by Professor(s) Mandy Ballinger and David Thomas today released scientific findings on the identification of genes and pathways associated with sarcoma predisposition.

The study has identified several new important genes that can cause sarcoma, and the implications of this research are far reaching for those living with sarcoma and their families, allowing detection of the cancer earlier and the potential for improved survival for those diagnosed with this sinister cancer.

The study has found a gene carried by one in 14 individuals diagnosed with sarcoma, which explains why the cancer emerges. In addition, the research team identified a previously unrecognised genetic pathway specific to sarcomas.

Professor Ballinger said today “Further understanding of the heritable genetic drivers will eventually lead to better outcomes for families impacted by sarcoma.”

The research was made possible by the dedication and hard work of those involved, and the support of funding partners

To read more please press the link below:

Link to Article

The new MDT facility opens at RPA

We were delighted to be invited to the opening of the new MDT facility at RPA for the Bone and Soft Tissue Sarcoma Unit.

Equipped with the latest technology to enhance patient care, the facility is dedicated to the memory of Dr Annabelle Mahar, a much loved, highly respected and world-renowned member of RPA’s Tissue Pathology Department.

Sarcoma is an insidious cancer, treatments are complex and it is the leading cause of cancer related deaths in the 15 to 24 year age group in Australia.(AIHW)

Equipping our brilliant sarcoma trained specialists with the space and technology to collaborate in weekly MDT meetings is a critical component of optimal patient care for those diagnosed with sarcoma.

Today marked an important step forward, and with it, tangible hope.

Dr Teresa Anderson delivered the opening words, acknowledging the work of Dr Annabelle Mahar, whose name the centre proudly bears, together with an outline of why this facility is needed.

Dr Stephen McNamara, devoted partner of Dr Annabelle Mahar’s heartfelt speech today resonated with all in the room. A plaque commemorating Annabelle’s immense contribution to pathology at RPA sits at the entrance to this facility.

After an illustrious career that saw him a pioneer in sarcoma surgery in Australia, Professor Paul Stalley has now passed the baton to incoming Chair of the NSW Bone and Soft Tissue Unit , Dr RIchard Boyle, who officially opened the facility with well chosen words expressing the significance of this facility.

We speak for all those touched by sarcoma in thanking Dr Teresa Anderson Chief Executive of the Sydney Local Health District, and NSW Health for this investment in the future of sarcoma in NSW.

Aus Genomic screening and clinical trials $185m

An emotional yet uplifting morning at @garvaninstitute as @angustaylormp together with @greghuntmp (not present due to another commitment), announced a joint funding agreement of $185.4min for the ground-breaking vision of Professor David Thomas and the stellar team at @garvaninstitute to facilitate the Precision Oncology Screening Platform enabling Clinical Trials (PrOSPeCT).

It is difficult not to be emotional when you stop to consider the gravity and breadth of this programme, and what it will mean to those patients living with cancer in Australia, and in particular, rare cancers such as sarcomas.  Sarcoma patients live with the uncertainty of a ‘heterogenous’ cancer (prone to constant change), and genomic screening for genetic mutations, and the discovery of therapeutic matches (personalised therapeutics)  is a critical component of working toward a cure.

Speakers included the Garvan Institute’s Mara-Jean Tilley who managed to do the impossible by putting a very polished press conference together in less than 24 hours, the ever humble Professor David Thomas, The Honourable Angus Taylor MP, Minister for Minister for Industry, Energy and Emissions Reduction, Mr Stuart Knight, General Manager Roche, Dr Tony Penna representing NSW Health, Andrew Hagger CEO, Minderoo, Richard Vines CEO of Rare Cancers Australia and Omico Chair, Paul Jeans.  Each of the speakers spoke with deep passion about the programme, and the inherent difference it would make to those who need it most.

Some of the many aims of this programme are to provide both paediatric and adult patients increased access to genomic screening, (an additional 20,000 patients), repurposed drugs and immunotherapies, to empower Australian clinical trials innovation and capacity building, and to drive pharmaceutical and biotech engagement, establishing Australia as a world leader in this space.

By expanding the current programme to accommodate 20,000 additional patients, will provide untold hope to those who will over the coming months and years, be diagnosed with cancer.

The NSW @nswhealth and Federal Government(s) @healthgovau @industrygovau are to be acknowledged and thanked for their support of this programme, @childrenscancerinstitute for their contribution to the very important paediatric and AYA component, together with
@roche and philanthropic partners @minderoofoundation @rarecancers

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Inter-Ewing-1 clinical trial

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.

Precision medicine & phosphoproteomics


Precision medicine and phosphoproteomics for the identification of novel targeted therapeutic avenues in sarcomas.  

Highlights

•  Outcomes for pediatric/AYA sarcoma patients are poor and no targeted treatments exist.
•  Pediatric and AYA sarcoma patients rarely harbor actionable genomics aberrations.
•  Phosphoproteomics captured novel actionable drivers missed by genomics screens

•  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

CCIA Phosphoproteomic Sarcoma Trial

CCIA Phosphoproteomic Sarcoma Trial

July 2021, saw the allocation of funding through the efforts of media heavyweight, Michael “Wippa” Wipfli in Celebrity Apprentice Australia, to the phosphoproteomic sarcoma specific trial, under the auspices of PRISM 2, Zero Children’s Cancer Programme. “Wippa’s” significant personal sacrifice throughout filming, and that of his young family, was on behalf of CRBF and sarcoma patients nationally.

The Wipfli Family Sarcoma Research Fund will be directed to the programme which will aim to conduct a high level tumour analysis on all sarcoma tissue samples with a view to discovering and matching personalised therapeutics not currently used for the treatment of sarcoma. Dr Emmy Fleuren will oversee this cutting edge research at the Children’s Cancer Institute of Australia, and enrolments will commence immediately.

To read more about this innovative research, please press the link below:

https://www.ccia.org.au/blog/community-funding-to-help-kids-with-sarcoma

STRASS 2 clinical trial receives MRFF funding

Eminent specialist surgical oncologist Associate Professor David Gyorki, together with Associate Professor Anne Hamilton, and colleagues from Royal Prince Alfred Hospital led by Associate Professor Peter Grimison, Princess Alexandra Hospital led by Professor Andrew Barbour collaborating with the national scientific body for sarcoma, ANZSA, have received a sizeable grant from the Medical Research Future Fund (MRFF) under the Rare Cancers, Rare Diseases and Unmet Need (RCRDUN) scheme.

The grant is to run the international trial in Australia – “A randomised phase III study of neoadjuvant chemotherapy followed by surgery versus surgery alone for patients with High Risk RetroPeritoneal Sarcoma (STRASS 2)”.

“Eligible Australian patients with retroperitoneal sarcoma at high risk of recurrence will be able to participate in this randomised controlled trial designed to answer the question of whether preoperative chemotherapy improves outcome for patients. The current standard of care for these patients is surgery alone. However, the risk of recurrence for many of them is 50% or higher.

The purpose of the STRASS 2 trial is to determine whether the administration of chemotherapy before surgery represents a better treatment compared to surgery alone and if the administration of chemotherapy before surgery is safe. It is also to assess whether specific chemotherapy can be used to reduce recurrence risk in a patient with either high-grade leiomyosarcoma or high-grade dedifferentiated liposarcoma. 

It is the first time a trial has studied the role of preoperative chemotherapy specifically in patients with retroperitoneal sarcoma, an anatomical location with unique challenges and disease patterns.” (ANZSA, July 2021)

The trial, led by the European Organisation for Research and Treatment of Cancer (EORTC) has participation from Europe, Canada, USA and now Australia.

“With aims to recruit 40 Australian patients, the STRASS 2 trial will open at Peter MacCallum Cancer Centre (VIC) as the lead site, with A/Prof Hamilton as the lead oncologist on the trial. The trial will also open at Royal Prince Alfred/Chris O’Brien Lifehouse (NSW) and at the Princess Alexandra Hospital (QLD).

About clinical trial

Please speak to your treating team about this clinical trial to see if you are eligible for it.

Remember that participation in a clinical trial is voluntary and that you should never feel forced to participate in it.

Before you agree to participate in a clinical trial, it is important to be as informed as possible. It can be helpful to write down questions you have before seeing your doctor.” (ANZSA, July 2021)

Please refer to the ANZSA website for further information by pressing the link below

https://sarcoma.org.au/news/news/successful-mrff-grant-for-strass-2-trial