Remarkable mums making a difference

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Karen Simpson and Jo Capp are remarkable mums with equally remarkable sons.

Both Karen and Jo-Ann stood by their son’s sides every step of the way, from the day of  their respective sarcoma diagnoses, throughout savage treatment regimes, and beyond.  Neither missed a beat.

With Mother’s Day fast approaching, it is timely to remember those mums whose lives have been impacted by tragedy of varying degrees, and to hold them in our thoughts and in our hearts.

Jake’s story

In the words of his mum, Karen Simpson

Jake Simpson was a normal sport mad young man living a normal life, when his life changed irreversibly.  Jake was diagnosed with cancer on 12th December, 2012.   On Christmas Eve in a further bitter blow, that cancer diagnosis was confirmed as Ewing Sarcoma.

Jake commenced treatment on Boxing Day, and was given the daunting prognosis of a 25%chance of survival.

The cancer was first located in Jake’s spine, hip and chest plate when the initial cancer diagnosis was made, and by Boxing Day,  it had metastasised to his collar bone, shoulder, and throughout his skull and bottom.

Chemotherapy initially worked, and in August Jake had a stem cell transplant and by October the family were informed he was in remission. For 15 months he lived normally celebrated his 21st birthday and continuing to reach all medical milestones.

Early January 2013, he complained of a sore back and on Australia Day it was confirmed the cancer had returned, this time no chance of survival unless a cure was found.

November we were told he wouldn’t see his 23rd birthday after chemo and radiation it just wasn’t working. 12 weeks later on the 17 February he closed his eyes.

Jake never once complained  and never asked why?  He started a bucket list,  and those last 10 weeks he had adventures with his family. Unfortunately the sarcomas on his spine paralysed Jake and he was bed ridden for the last few weeks of his life, which according to his mum Karen, “annoyed him”.

Jake fought courageously, but that cure just didn’t come.

Today these woman honour their sons with the tireless work they each do to advance sarcoma awareness and funding, despite the hand of cards they have each been dealt.

Reid’s story 

In the words of Jo-Ann Capp, Reid’s mum

Reid’s diagnosis of Ewing’s Sarcoma came when he was a month off turning 6 and it was incredibly life changing for all of us. Occasionally he complained of a sore leg. We put it down to growing pains.

On May 21 2007  we were told he would be facing massive doses of chemotherapy, perhaps some radiation on his lungs, the loss of his right tibia with only a 30-60% chance that he would live.

We got through all the treatment then due to having his tibia removed and replaced with his left fibula Reid went on to break this leg 14 times over the next 10 years. He spent his entire childhood until he was 16 in either a cast or with an Illarzarov frame attached to straighten or lengthen his leg.  He is a pretty resilient little bugger, and not too mention a demon on crutches!!

He is now 19 (nearly 20) and enjoying everything a young man his age can do!  He is at University in Brisbane studying to be a teacher and loving his freedom living away from the watchful eyes of his parents!

As if this process was not enough?, Jo-Ann went on to write a book, Four Hot Chips – “One family’s story of childhood cancer, love and how they survive, and how they nearly didn’t”. The book is now available through Audible, by following the link below:

https://www.audible.com.au/pd/Four-Hot-Chips-Audiobook/B086WQ7368

CRBF and the sarcoma community wish to extend our sincere gratitude to both Karen and Jo-Ann for their courage, and for their unwavering dedication to funding a cure for this insidious cancer.

The IL-23 Sarcoma clinical trial begins

World-first clinical trial targets immune molecule IL23 as potential treatment for sarcoma

Sydney researchers are testing whether an existing medication could be repurposed to treat sarcoma.

Garvan team leading IL23 sub-study (clockwise from top left) Dr Maya Kansara, Prof David Thomas, Dr Mandy Ballinger, Dr Frank Lin, Keith Thornton, Dr Subo Thavaneswaran, Dr John Grady

Media Release: 26 March 2021

Recruitment is now open for a national clinical trial that will test whether an existing therapy for psoriasis can help treat patients with sarcomas, which are rare cancers arising in the connective tissues (bone, muscle, tendons, nerves, fat, cartilage and blood vessels) and may occur anywhere in the body. In particular, the trial focuses on osteosarcoma, a rare but aggressive form of bone cancer that most commonly affects teenagers and young adults.

The phase II clinical trial, which is a collaboration between the Garvan Institute of Medical Research, Omico (the Australian Genomic Cancer Medicine Centre) and the University of Sydney’s NHMRC Clinical Trials Centre, will investigate if treatment with a drug targeting the immune molecule IL23 could improve outcomes for sarcoma patients.

The new trial is the first globally to test a new anticancer pathway for sarcoma. It is supported by the Cooper Rice-Brading Foundation, the Australian Government, the NSW Office of Health and Medical Research, SunPharma, The Kids’ Cancer Project, the Matthew Fisher Sarcoma Research Fund and the Daniel Allchin Race for a Cure, and brings new hope to those affected by sarcoma.

“This immunotherapy trial is part of our national Molecular Screening and Therapeutics (MoST) trials program, and will be open in at least eight centres nationally,” said study chief investigator Professor David Thomas, Head of the Genomic Cancer Medicine Laboratory at Garvan, Director of The Kinghorn Cancer Centre and CEO of Omico.

“Sarcomas are aggressive cancers with few treatment options. For osteosarcoma in particular, there have been few advances in treatments for this form of cancer in four decades. We hope that this clinical trial, which will investigate if treating patients with a sarcoma with a medication currently in use for another condition will have anti-cancer effects.”

Immunotherapy for osteosarcoma

Sarcomas are rare cancers of connective tissues such as fat, muscle and bone. They particularly affect the young, with osteosarcoma, or bone sarcoma, among the ten most common cancers affecting Australians between ages 15 to 29.

The five-year survival rate for sarcomas remains as low as 65%, while options for patients with incurable disease are very limited.

The new clinical trial follows an earlier study that demonstrated the immune molecule IL23 is central to the development and progression of soft-tissue and bone sarcoma in animal models. By targeting IL23, the study authors were able to successfully shrink osteosarcoma tumours in mice.

“Our previous research showed us that when we blocked IL23 in mice with osteosarcoma, their tumour growth slowed,” said Dr Maya Kansara who leads the Immunobiology of Cancer Group at the Garvan Institute.

“We hope that our promising pre-clinical results will translate to improved clinical outcomes in osteosarcoma patients.”

The trial, opened to enrolment this month, will examine how patients with advanced osteosarcoma and soft tissue sarcomas respond to the anti-IL23-targeting treatment. It is a single-arm, open-label phase II trial design which means all 32 sarcoma patients planned to be recruited will receive the treatment.

“If we see promising signs from this initial study, we believe that targeting IL23 may play a role in the treatment of many cancer types,” said Professor Thomas.

Robert Beech-Jones, Chairman of the Cooper Rice-Brading Foundation, said “CRBF is delighted to have the opportunity to support this highly significant research. We thank Professor David Thomas and Dr Maya Kansara and the highly accomplished team behind this research, for the hope this world first study provides to sarcoma patients. This exemplifies the high level research Cooper envisaged this Foundation would support.”

For further information about the clinical trial [ACTRN12620000984998] please see the eligibility criteria. To register interest for the trial please contact the NHMRC Clinical Trials Centre, University of Sydney on most@ctc.usyd.edu.au or 02 9562 5000.  

Declaration: This clinical trial is being supported by the Australian Government, the NSW Office of Health and Medical Research and SunPharma. There are no conflicts of interest. The clinical trial is being sponsored by the University of Sydney and is being conducted under the Australian CTN scheme. The research has ethics approval from St Vincent’s Hospital Human Research Ethics Committee.

Media contact:

Dr Viviane Richter, Senior Marketing and Communications Officer, Garvan Institute, v.richter@garvan.org.au

International Childhood Cancer Day

International Childhood Cancer Day (ICCD) is a global collaborative campaign on the 15th February, to raise awareness about childhood cancer, and to express support for children and adolescents with cancer, the survivors and their families. (ICCD, 2021)

Every year, more than 400,000 children and AYA’s are diagnosed with cancer, with Sarcoma accounting for up to 20% of these diagnoses.

As the sun sets on the 2021 ICCD, we recognise and silently support those young patients and their families walking this road, and cherish the memory of those whose lives have been lost.

We thank those remarkable individuals and organisations who are immersed in childhood cancer. From the dedicated paediatric, and adolescent and young adult, nurses, specialist support staff, and medical oncology teams, to the passionate researchers working tirelessly towards a cure, the state and federal governments for their ongoing commitment to advancing children’s cancer research, and finally, the not-for-profit organisations, often driven by personal and devastating loss, which help support the research into a cure.

Each of these bodies and individuals has an equally important role to play, as we strive collaboratively to find a cure for all childhood cancers.

Perspectives of the SCNC Role

The role of the Sarcoma Clinical Nurse Consultant is pivotal to not only the quality of patient care, but assists greatly in supporting and navigating the patient through one of the most savage cancer treatment regimes.

“Patients diagnosed with sarcoma experience complex treatment pathways and unmet needs. The Sarcoma Clinical Nurse Consultant position was recently established in Western Australia to improve the quality of patient care. As this role is new in Western Australia and nationally, research is required to understand the duties, benefits, and gaps of the position.” (Perspectives of the sarcoma clinical nurse consultant role: A qualitative study conducted by a stellar team in WA, Rhys Weaver, Moira O’Connor, Irene Ngune, Richard Carey-Smith, Jane Phillips and Georgia Halkett) thoroughly explores the requirement for this critical role within the sarcoma MDT.

Congratulations to the team , and to our WA counterparts, Sock it to Sarcoma! – for facilitating this much needed research.

https://www.sciencedirect.com/science/article/pii/S1322769620301657

Associate Professor Paul Craft, AM

Associate Professor Paul Craft has been acknowledged for his dedication and commitment to oncology and professional organisations, in the Australia Day Honours list, awarded a Member of the Order of Australia (AM).

Professor Craft has a special interest in sarcoma, and forms part of the ACT region’s Sarcoma Multidisciplinary Team.

Since 1988 Professor Craft  has contributed significantly to Australian medical committees, councils and organisations including the ACT Health Research Ethics Committee, ACT Cancer Council, Royal Australian College of Physicians, and the Clinical Oncology Society of Australia.

Today, we sadly farewelled (Dr) Matt Fisher at a beautiful service in Canberra. Matt tragically lost his life to sarcoma on January 8.

Professor Craft was Matt’s oncologist and there was never any doubt how highly Matt regarded this very special man.

Matt was a scientist and understood well the hard work, experience and dedication it takes to make a significant footprint in a gruelling speciality such as oncology.  

From all at the Cooper Rice-Brading Foundation and the sarcoma community, we extend our heartiest congratulations to Professor Craft, AM, and our deepest gratitude for the profound difference he makes in the lives of cancer patients.

Sony & Sydney Sixers “You Can Stay”

YOU CAN STAY is an initiative of the Sony Foundation, and provides emergency accommodation for rural teenagers with cancer, and their families, enabling them to travel to the city for life-saving cancer treatment.

The Sony Foundation provides this service at no cost.

Each year the Sydney Sixers join with the Sony Foundation to raise funding and awareness for this outstanding cause, and this year, CRBF Ambassador Jack Gibson, was interviewed with long time friend and team mate Hayden Kerr, together with Captain, Daniel Hughes to promote the game which took place on Saturday 16 January, 2021.

As a significant portion of these young patients are living with a sarcoma diagnosis, we extend our sincere gratitude to both the Sony Foundation and the Sydney Sixers for the work they have done and continue to do, in making the lives of young rural cancer patients and their families, just a little less stressful.

Vale Matt Fisher – An inspiration to so many

Vale Matt Fisher

24 July, 1981 – 08 January, 2020

It is with deep sadness we learned this morning, of the passing of Matthew (Matt) Fisher.

Matt was diagnosed with Rhabdomyosarcoma in March of 2020 and underwent one of the most gruelling of treatment regimes. His courage and resilience never waned for a moment. His selflessness knew no bounds.

Matt leaves behind his much-adored wife and his “rock”, Naomi, who walked every step of the way beside Matt, whilst juggling the demands of their two precious daughters, Vivienne and Sylvie aged four and one.

There were so many learnings from this young family whose perfect life literally crumbled before them at the hands of sarcoma. Humility and grace in the face of adversity which needed to be witnessed to truly understand, perseverance and determination day after day, despite very little positive news along the way, and a love story like no other which will last forever.

The support of this remarkable young family extended to mum Susan who left her home in Japan, during Covid, to ensure they were never alone, together with that of the extended family. Everyone knew their role, and they each stepped up to ensure Matt, Naomi and the children were shrouded in love.

Yesterday, as per Matt’s wishes, the Matthew Fisher Sarcoma Research Fund was announced. Matt was a scientist and knew the undisputed value scientific research plays in advancing sarcoma. Unsurprisingly, for those who knew Matt, he opted to ensure his legacy was to help those yet to be diagnosed.

To this beautiful family who tonight contemplate life without Matt, we send you love, strength and support, and remind each of you never walk this road alone.

Matt, wife Naomi and their daughters Sylvie and Vivienne

CRBF Memorial T20 Covid cancellation

It is with the deepest regret the decision has been made to cancel the 2021 Memorial T20 cricket match.

This event will be back bigger and better in 2022, in time to mark what would have been Cooper’s 23rd birthday.

Join us in taking a trip down memory lane, with the wonderful photos from last year’s event, captured by photographer Katie Hardyman, who donated her professional talent and time to CRBF, to ensure these very special moments were captured for posterity.

Memorial T20 cricket 2020

The Sydney ‘Thunder’s Baxter Holt


Ambassador Baxter Holt takes the field again tonight for the Sydney Thunder against the Melbourne Stars, in the national BBL T20 Series.

Baxter has returned to the field, and is at his brilliant best after a twelve month rehabilitation to overcome a serious back injury.

He is not only one of the serious rising stars in the game of cricket, but an ambassador for CRBF, he is always helping with both sarcoma awareness and lifting the spirits of sarcoma patients when called upon. He is also one of the kindest and most considerate young men you would walk the earth to meet.

We wish Baxter and the Sydney Thunder every success in his game tonight.

NOA Vision 20-30. Hope for the future

Monday 9 November, marked the launch of the National Oncology Alliance (NOA) Vision 20-30, with a three hour conference hosting major stakeholders, including hosting leading Australian oncologists and researchers, together with presentations from cancer patients and families.

It was three hours that provided hope for the future for those living with a cancer diagnosis, with a particular emphasis on those living with a rare cancer diagnosis. Vision 20-30 will place the magnifying glass on the current systems, and how they fit within the global context, with particular alignment to cell therapies, genomics and personalised therapeutics.

With support from the Minderoo Foundation, the Federal Government, and Rare Cancers Australia, Vision 20-30 will form the basis for advancing cancer in Australia.

Read the full report by pressing the link below.

https://www.dropbox.com/s/thry781cf7vy5b6/NOA_Vision20-30%20FA%20r2%20Digital.pdf?dl=0