An Update from the Chair- Mid Year Review
ASSG continues to develop its capabilities and the Board is working most effectively in stewarding priorities identified by members and as reflected in the 2016-2021 strategic plan. At the 18- month checkpoint of the five -year plan, it is pleasing to note the considerable progress in all of the four core strategies: developing and delivering quality research; increasing awareness and recognition; funding and governance. ASSG members strive to direct their efforts to make a positive difference to sarcoma patient outcomes and sarcoma patient and family experience with treatments. Thank you to each and every one of you for your care, concern and contribution.
ASSG celebrates 10 years in 2018 and this remarkable milestone will be marked with a celebration and reflection 4pm-7pm on 10 August 2018 in the Shine Room at the Kinghorn Cancer Centre in Sydney. All are welcome to participate and share in the event experience. ASSG has indeed come a long way in its first decade with much gratitude to the vision and leadership of inaugural Chair David Thomas and our second Chair Jayesh Desai and of course the wonderful support from Executive Officer Denise Caruso who is in her eighth year at ASSG this year. There are many others to thank and there will be opportunity to recognise contributions on 10 August 2018.
The work on progressing the coming together of ASSG and ASG is proceeding to plan. The combined ASSG and ASG leadership group will be reviewing the next version of the required documentation including the proposed constitution in coming weeks following provision of expert legal assistance. The material is expected to be finalised soon after and further communication to members will outline the way forward in the lead up to the October 2018 meeting in Perth. My sincere thanks to the hard -working members of the combined ASSG and ASG leadership team for the dedication and efforts in progressing this matter collaboratively and in good spirit.
The Board has met on two occasions since the beginning of the year – February and May and will be meeting again in August and October. The Executive Committee has met on three occasions in February, April and July 2018.
The progress in ASSG core activity- quality research is indeed most impressive. The Board reviewed progress reports in around 20 research related activities…tangibly demonstrating the depth and breadth of research activities.Funding continues to be active and most pleasing to report the renewal of the Cancer Australia three-year funding with a small but most welcome increase. In addition, philanthropic activities continue positively. Members of the Board presented to the newly formed Cooper Rice Braiding Foundation (CBRF), and it seems that positive relationship with ASSG is likely to be formed. A huge gratitude and humble thanks for continuing support to ASSG philanthropic groups, Rainbows for Kate, Hannah’s Chance, Stop sarcoma, Krikori and Stone families, Helen Sewell and GPA Ursini Charitable foundation.
Through CBRF awareness and recognition of sarcomas to be increased through NOVA Sydney radio sponsorship of the iconic City to Surf fun run. Furthermore through the ASSG’s social media activities, we have increased our reach. The ASSG was recently awarded a research grant from the youth cancer group, CANTEEN to support an Ewing Sarcoma clinical trial. This was announced by the Health minister and well publicised.
Finally, in a note on governance, the Board completed its first Board effectiveness review in May 2018– a self -reflection of Board performance. The results were most pleasing evidencing a cohesive and well -functioning Board. A number of areas of improvement were highlighted and are already being actioned.
David Thomas has stepped aside as a longstanding member of the Executive Committee. On behalf of the Board and members, I would like to express sincere heartfelt gratitude and thanks to David for his tireless and valuable contribution over many years. David remains on the Board. We warmly welcome Angela Hong to the Executive Committee who continues to provide valuable insights and contribution to ASSG matters.
Thanks again to all and in particular members of the Scientific Advisory Committee driving the quality research activities, the directors and staff of ASSG. I look forward to seeing many of you at the 10th anniversary celebrations on 10 August 2018.
International Sarcoma Awareness Month
July is International Sarcoma Awareness Month and we are very excited to announce that Sarcoma information can now be found on Cancer Australia's Website. Please visit sarcoma.canceraustralia.gov.au/home for more information.
Sarcoma Matters cookies made by Leanne Fenton for a fundraiser in memory of her friend Karen who passed away from sarcoma and to support the ASSG.
Cancer Australia Funding for ASSG
The ASSG is pleased to announce that we have received another 3 years of funding through the Cancer Australia Support for Clinical Trials grant scheme. This funding has been the backbone of support for the ASSG (and other cooperative clinical trial groups) for the last 10 years. This grant supports the infrastructure and research resources (such as the National Sarcoma Database) of the ASSG which allows for the support of research conduct.
Federal Health Minister Greg Hunt and CanTeen awarded $3.2 million in funding to four clinical trials that will give adolescent and young adult cancer patients access to cutting-edge treatment. This includes funding of $522K to the Australasian Sarcoma Study Group to make an important international clinical trial available to young Australians with recurrent Ewing Sarcoma, this trial will be headed up by Dr Susie Bae and Dr Jayesh Desai (pictured below right).
Thank you to our Donors
The ASSG would like to thank all our generous donors. Every dollar helps and allows the ASSG to provide clinical trials and research projects for the sarcoma community and as always 100% of donations go to Sarcoma research.
We would like to especially acknowledge the significant contributions and donations to the ASSG in the recent months:
- GPA Andrew Ursini Charitable Fund for their donation of $150,000 for sarcoma research
- Sargents Pies Charitable Foundation for their generous donation of $50,000 in memory of Laura Hinds
- Nathan Kammann completing an ultramarathon (90km) race to raise funds for the ASSG's Leon Stone Sarcoma Research Grant in memory of his friend Leon Stone who lost his life to sarcoma.
- Sam Price donation of $10,000 in support of the Leon Stone Sarcoma Research Grant.
Thank you to all our supporters!
2018 Australian Sarcoma Annual Scientific Meeting
The Australian Sarcoma Group 2018 Annual Scientific Meeting will be held Friday 12th October – Saturday 13th October 2018 at the Pan Pacific, Perth. The theme for the meeting will be: Collaboration and Innovation: The multidisciplinary approach to sarcoma care.
The meeting brings together well over 120 clinicians and researchers of all disciplines, as well as scientific and allied health sarcoma experts.
The two international guest speakers are;
Robin Jones, The Royal Marsden (UK) who is medical oncologist with a specialist interest in bone and soft tissue sarcomas
Rob Pollock, Royal National Orthopedic Hospital (UK), a consultant sarcoma surgeon who specialises in hip and knee surgery as well as bone and soft tissue tumours
For more information visit our conference website. Registrations will open soon.
Abstract submissions are now open and will close 1 August 2018. Please see http://austsarcoma.aoa.org.au/abstracts/4594253519 for more information and to submit your abstract.
Sarcoma Research Grant Announcements
Every year the ASSG is able to award ASSG Sarcoma Research Grants thanks to the generous donations of our supporters. We are pleased to announce the recipients the four ASSG Sarcoma Research Grants for 2018.
- The Johanna Sewell Sarcoma Research Grant of $50,000 was awarded to Dr Anneke Blackburn at the Australian National University for her project "Dichloroacetate (DCA) in Osteosarcoma: A non-toxic agent targeting cancer metabolism"
- The Xavier Krikori Sarcoma Research Grant of $20,000 was awarded to Dr Federica Saletta at the Children's Hospital at Westmead for her project "Development of liquid biopsy assays to test Minimal Residual Disease in Ewing’s sarcoma and alveolar rhabdomyosarcoma patients"
- The Leon Stone Sarcoma Research Grant of $20,000 was awarded to Dr Jonathan Karpelows at the Children's Hosptial at Westmead for his project "Judging a cell by its cover - Osteosarcoma Circulating Tumour Cells testing"
- Hannah's Chance Sarcoma Research Grant of $30,000 was awarded to Dr Jeremy Lewin Peter MacCallum Cancer Centre for his project "Applying radiomics to predict outcomes in patients with high grade retroperitoneal sarcoma treated with preoperative radiotherapy"
These grants are directly supported by philanthropic groups that raise funds to support sarcoma research. To date the ASSG has been able to award over 1 million dollars in ASSG Sarcoma Research Grants! Thank you to our supporters.
For more information, please visit our website.
Update on COSA CTCN (Clinical Trials Consumer Network) meeting
It was an eventful day as we had 4 speakers covering topic on Consent/Ethics, Telehealth, Health Economics and EON updates. It was lovely to meet other consumer reps as well. I was the youngest there and had so much to learn.
The first talk by Nik Zeps was insightful in terms of understanding behind the scene how research/clinical trial is conducted and the complexity of ethical bodies that often hinders the progress of research/trials. He created a simple questionnaire for cancer patients to ask before proceeding for cancer trial as many patients sign the form without really understanding the information. This is his updated paper on Ethics: https://www.nhmrc.gov.au/guidelines-publications/e72
Richard from Health Economics gave an interesting talk as well in Health Economics and how we can put forward a case to get medication on PBS. He went into detail how the Pharmaceutical benefits advisory committee used health economics and Quality of Life formulas to determine whether or not a drug gets on the PBS.
Hopefully, going forward we can help more sarcoma patients to navigate through their treatment and increase survival rates.
ASSG Consumer Representative
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In This Edition
Chair's UpdateSarcoma Awareness Month and Sarcoma Information now available on Cancer Australia's Website
Funding Announcements for ASSG
Thank you to our Donors
2018 Annual Scientific Meeting - Perth
Sarcoma Research Grant Announcements
COSA CTCN Update
ASSG on Facebook and Twitter
SMOC: A 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
International Phase 3 trial for patients with locally advanced unresectable or metastatic Ewings sarcoma. Now closed to recruitment Read more
SARC32: A Phase II Randomised Controlled Trial of Neoadjuvant Pembrolizumab with Radiotherapy and Adjuvant Pembrolizumab in Patients with High-Risk, Localised Soft Tissue Sarcoma of the Extremity.
rEECur: An International Randomised Controlled Trial of Chemotherapy for the Treatment of Recurrent and Primary Refractory Ewing Sarcoma.