A beautiful young life cut short by clear cell sarcoma

The 11th January, 2022 was one of the happiest days of Kienan Moore’s 21 years.  A day when, in a fairytale ceremony, he married the love of his life, his fiance Olivia, surrounded by his adoring family, and loving friends.  His beaming smile that was ever present, said it all.In a cruel twist of fate, Kienan and Olivia were to have only weeks to experience the unbridled joy of being newlyweds, before Kienan this week, tragically lost his life to clear cell sarcoma.

Throughout the 13 weeks that lapsed from recurrence of the cancer in November, to his passing, Kienan showed extraordinary selflessness.  At a time when he could be forgiven for shutting the world out, he brought the outside world in, by speaking publicly about his diagnosis, and his very uncertain future. This took extreme bravery at a time of unthinkable vulnerability.

Kienan’s positivity never waned, despite the hand of cards he had been dealt.  In fact, through the angst and the heartache, he was determined to be heard, and to tell his story in an effort to help others. He took every opportunity to start the conversation about sarcoma, and to highlight the importance of never ignoring pain and changes in the body, or unexplained lumps and bumps. He did so with courage, resilience and positivity, often during his darkest moments. When we recently asked what we could do to make his life better, he wrote ” I’m fine –  I don’t need anything. Awareness of this cancer.  That’s all I care about”.   Kienan continued to put others first with the unwavering love and support of his family.

We send our love and strength in abundance to Nicole, David, Cassel and Olivia, together with Kienan’s friends, as they contemplate their first days without him.

“Some people come into our lives and leave footprints on our hearts and we are never ever the same.” Flavia Weedn

We ask each one of you who reads this post to honour Kienan’s memory by not ignoring symptoms which could be potentially life saving.

To read more about common symptoms of sarcoma and to share some special memories of this very extraordinary young man please press on the link below

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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