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International Sarcoma Awareness Month

Every July is International Sarcoma Awareness Month.  In light of this, I thought it timely to include a brief review of the key issues around sarcoma incidence and care.

Sarcomas are a group of more than 50 different types of malignant tumours that arise from the bone and soft tissue.  

Sarcomas are very rare.  They make up approximately 1% of all adult cancer diagnosis but strikingly 15% of all cancers in children under 20 years old. Sarcomas have a very poor prognosis. Roughly 50% of patients will survive their cancer long term.  

Sarcomas are very complex and heterogeneous and are widely variable in treatment and outcomes.

Sarcomas disproportionately affect the young and therefore have a larger societal impact than other later occurring cancers.

The sarcoma community continues to fight hard for research funding to improve outcomes.  ASSG has partnered with Cancer Australia to co fund a significant research project in 2017.  We hope that this combined investment, in a large scale research project focusing on sarcoma will yield high impact and important research results. 

Denise Caruso



International Sarcoma Awareness Month

2016 Annual Scientific Meeting in Sydney

Message from the ASSG Chair - Mr Adrian Cosenza

New ASSG Consumer Representative - Amy Levings

New sarcoma trial at Royal Prince Alfred Hospital

 2016 Australian Sarcoma Annual Scientific Meeting

The 2016 Annual Scientific Meeting will be held October 15 and 16th in Sydney at the Garvan Institute of Medical Research (located next to the Kinghorn Cancer Centre).  Professor David Thomas is the local convenor and no doubt will deliver an impressive and interesting scientific programme.

We are also delighted to announce we will have inspirational cancer survivor and former pro surfer, Richie Lovett open the 2016 annual sarcoma meeting.

Richie was diagnosed with clear cell chondrosarcoma in his thigh in 2005 aged 31. He underwent radical hip surgery with prosthetic implantation and was able to return to competitive surfing. Richie currently is a surfboard designer, plays the role of Brand Ambassador for Surf Hardware International and a spokesman for Hurley, Vertra, Electric, the Hannah's Chance Foundation and the Cancer Council. Richie released his first book in 2013 called The Big Sea, which talks about surfing, his life and his battle with cancer. 

Annual Sarcoma Meeting International Speakers

  • Dr Matt van de Rijn – Professor, Department of Pathology, Stanford University Medical Center, USA. Professor van de Rijn’s group identified the genetic rearrangement within Tenosynovial Giant Cell Tumors, which has led to the development of effective systemic therapies for this disease (Tap et al., New England Journal of Medicine, 2015).
  • Dr Miguel Ayerza - Surgical oncologist Italian Hospital of Buenos Aires Argentina. Professor Miguel Ayerza is a Professor of Orthopaedic Surgery at the University of Buenos Aires and is a renowned orthopaedic oncologist who has served on the committees of several International societies and as President of the Association of Bone and Joint Surgeons.
  • Dr Lee Helman - Head of Molecular Oncology and Acting Director, Centre for Cancer Research, National Cancer Institute, USA. Dr. Helman's laboratory focuses on rhabdomyosarcoma, Ewing's sarcoma, osteosarcoma, and pediatric gastrointestinal stromal tumours.  His group aims to: (1) determine the pathophysiologic consequences of IGF signaling; (2) identify the molecular/biochemical determinants of the biology of these sarcomas; and (3) apply preclinical laboratory findings to  develop novel clinical studies for these sarcomas.

Registrations are now open, with full registration at $300 and trainee/students at $200 which includes two days of full catering at the meeting and the amazing Gala dinner at the Art Gallery of NSW.

Call for Abstracts are still open. The submissions deadline has been extended to 23rd August. Please see our website for more information.

Message from the ASSG Chair - Mr Adrian Cosenza


It is now 9 months since I commenced in the role of Chair of ASSG in October 2015 and in that period I have chaired three Board and six Executive Committee meetings.  I would like to express my thanks for the warm welcome extended by directors and our hard working and passionate Executive Officer Denise Caruso.

ASSG is a relatively new organization established in 2007. I have been impressed with the dedication; passion and commitment of the team at ASSG and the group’s achievements in that short time are remarkable. I would like to acknowledge the wise and considered guidance and stewardship provided by founding Chair David Thomas and immediate past Chair Jayesh Desai. I thank all Directors and members of the scientific advisory committee (SAC) past and present who freely give their time to pursue improved patient outcomes through collaborative research endeavours.

At the October 2015 meeting the Board progressed a review of the composition of the Board and this resulted in some changes. I would like to thank those who served on the Board - Warren Joubert and Martin Tattersall both of whom continue to provide their services on SAC. A formal warm welcome and thanks is extended to both David Gyorki and Angela Hong. In addition to David Thomas and Jayesh Deasi, a further special thanks to Philip Crowe, Marianne Phillips and Geoff Mckinnon for their continued service on the Board.

ASSG is entering an exciting and new era in its journey. ASSG is a public company limited by guarantee and this company structure requires directors to be versed in the responsibilities of directors and good governance requirements. Directors are participating in three special education sessions the first ‘The Basics of Governance’ of which was delivered at the April 2016 meeting. The next session ‘People in the Boardroom’ will be delivered at the 15 August 2016 meeting with the final session ‘Strategy and Risk’ presented at the 14 October 2016 meeting.

The Board is stewarding a fresh review of strategy and objectives. As part of this refresh all directors were asked to consider and provide their responses to a number of questions on key challenges and opportunities facing ASSG’s involvement in improving outcomes for sarcoma and related tumours in Australia. Directors were requested to express their view on ASSG’s future ambition and what success would look like. Also input was sought on the top three most pressing short term initiatives and top three long term initiatives that ASSG should pursue.

These insights offered by directors were shared and discussed at the April 2016 Board and SAC meetings. In summary:

  • The top three challenges identified are funding, quality research and relationship building.
  • The top three opportunities identified are building international involvement, increasing ASSG profile and awareness and funding.
  • Future ambition and success included lead positions in quality research, awareness/lobbying and sustainable funding.
  • The top three short term initiatives identified include quality research including appropriate clinical trials, developing a viable funding strategy; and consolidating governance.
  • The top three long term initiatives include developing a quality research portfolio comprising both domestic and international research including progressing successful translational projects; achieving sustainable independent funding and to consolidate gains in contemporary governance.

Directors identified philanthropic groups, corporate sponsors and the clinical community as important stakeholders amongst others identified. The important role of advocacy and profile building was highlighted as key in achieving alignment and ownership of its role in improving outcomes for sarcoma and related tumours.

This valuable input will greatly assist to shape a refreshed strategy for ASSG for the next five years plus. The Board will be discussing this at the next meeting in August 2016. Member feedback will be sought as the form of strategy including milestones and deliverables is further developed in coming months.

I look forward to meeting members in coming months and warmly welcome suggestions and feedback on all matters involving ASSG. Thank you for your interest and contribution.

Adrian Cosenza
29 July 2016

Welcome Amy Levings to the role of ASSG Consumer Representative

Wow, August already! Where has the year gone? They say time flies when you’re having fun and 2016 certainly hasn’t failed to deliver. Despite having my sights set on swimming at the Rio Olympics at the start of the year, I’m looking forward to being a part of the Northcliffe SLSC World Life Saving Championships team. In mid- September I will be flying out to compete in the Netherlands. Hard work always pays off, whether you achieve your exact goal or not, it’s clear that putting in the hard yards opens many pathways of opportunity.

Hannah’s Chance are excited to announce the annual Butterfly Ball will be back on again this year in Brisbane! We will be hosting an amazing event on Saturday October 8th at the beautiful Hillstone in St Lucia, while raising research funds directly to the ASSG. It’s set to be a jam-packed night full of live entertainment, beverages, catering and listening to our Sarcoma Warriors, Dr Denise Caruso and of course remembering Hannah Ciobo-O’Driscoll’ and her wish to raise awareness and research for Sarcoma.

I’m also delighted to announce my new role as a consumer representative for the Australasian Sarcoma Study Group. This is something I’m very passionate about and it’s an absolute privilege to be included in such a vital aspect of Sarcoma research and clinical trials. I really look forward to what the future will bring.

Amy Levings

New sarcoma trial at Royal Prince Alfred Hospital

Central Sydney cancer specialists and young people with sarcoma cancer are trying out a new way of combating the deadly and historically-neglected tumour, with an innovative study starting in Australia.

Researchers inject tumours with a nano-particle activated by radiation therapy to shrink the cancer tumour, making the following surgery more effective. Please see the video link for more information.

      July 2016
Research Brief

Beyond ‘single-gene thinking’: Australian researchers uncover the complex genetic secrets of cancer risk in children and young adults
In a landmark multi-country study, Australian researchers have uncovered numerous new genetic risk factors for bone and soft-tissue sarcoma. Read more

CASPS: An international clinical trial assessing cediranib treatment in patients with metastatic alveolar soft part sarcoma. Read more
SMOC: A pilot study to determine whether whole body MRI is a useful screening tool for high risk patients and their family members. Read more
ISKS: International Sarcoma Kindred Study is a population based project investigating the familial aspects of sarcoma. Read more
EuroEwings/RFK: International Phase 3 trial for patients with locally advanced unresectable or metastatic Ewings sarcoma. Read more

Next Edition

Dec 2016

Newsletter of the Australasian Sarcoma Study Group
Peter MacCallum Cancer Centre Locked Bag 1, A’Beckett Street Melbourne 8006
T 613 9656 3605F 613 9656 5875E sarcoma@petermac.orgW www.australiansarcomagroup.org