As Canadians recognize the annual Sarcoma Cancer Awareness Week during the third week of June, the Sarcoma Cancer Foundation of Canada (SCFC) is proud to stand alongside our network of patients from coast-to-coast, to celebrate 10 years of collaboration and support. The Foundation has a series of activities planned to engage the community on key issues facing rare cancers in Canada, as well as working collectively with the medical community and government, to improve the landscape for anyone facing a sarcoma cancer diagnosis in Canada.
“Ten years ago if you were diagnosed with sarcoma cancer, there were little to no Canadian resources to help patients during a time of great uncertainty, anxiety and fear,” says Founder and Chair of the SCFC, Diana Arajs. “It is remarkable to reflect back on just how much this volunteer-run organization has accomplished in such a short amount of time. The research projects we have made possible have contributed in meaningful ways to the global effort looking at new treatment research and rare cancer mutations, and we’ve been able to contribute well-used and much needed patient resources and tools, as well as one-on-one patient counseling and support.”
Despite a decade of effort to advance the needs of patients and families, there is still much work to do. A survey conducted by the Foundation in 2018 found that those without a direct connection to sarcoma still don’t know enough when it comes to who is at risk, where it strikes in the body or what innovation looks like for this rare type of cancer. This was an improvement from a similar survey conducted in 2014 where alarmingly low awareness of sarcoma and its symptoms were reported. During the officially recognized annual awareness week(June 15 – 20), the Foundation and its ambassadors in provinces across the country will aim to dispel myths, correct misinformation, improve awareness, and raise funds for new sarcoma research.
Arajs remarks, “We are entering a very exciting time in the research of cancers generally, with new and innovative approaches to treatment. Sarcoma cancer, which has been disproportionally under- funded and under-recognized is making significant progress on the world-stage from a research perspective and we will continue to advocate on behalf of Canadian patients to ensure equitable access to the new frontier in cancer care.”
Although recognizing ten years of achievements during a global pandemic is challenging to do in person, the community is coming together to participate in virtual events planned in local communities to raise research funds and improve patient resources. SCFC urges all Canadians during the awareness week, even those who are not personally touched by sarcoma to help improve understanding of a rare cancer that can more commonly affect children, but also many adult men and women.
About the Sarcoma Cancer Foundation of Canada
The SCFC was founded in 2010 in memory of Vera Arajs and other Canadians who have lost their lives to sarcoma cancers. We are a volunteer-run national organization supporting patients and their families, while working with Canada's leading researchers in their efforts to the disease.
It is our mission to connect patients and their families with the best medical information and community resources, to ease the process of dealing with a sarcoma cancer diagnosis and treatment.
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Rozlytrek® is an oral medicine that is used to treat NTRK gene fusion-positive tumours including many types of sarcoma.
A great project helping to overcome some of the demographic challenges around studying angiosarcoma.
As part of our ongoing efforts to support cutting-edge research initiatives, we have been campaigning to raise $100,000 to support new research of targeted sarcoma treatments that we hope will improve patient outcomes and potentially revolutionize the way in which sarcoma is diagnosed and treated.
This brand new research will give patients with rare forms of soft tissue sarcoma (STS) faster, simpler, and more accurate diagnoses, so that their treatment can get started sooner. Since STS is not just one disease – there are over 50 types – patients often need to undergo a great deal of invasive testing, including surgical biopsies, to be diagnosed accurately.
Led by a collaborative team of scientists at Sinai Heath System’s Christopher Sharp Cancer Centre and Princess Margaret Cancer Centre, the research will use Next Generation Sequencing technologies to analyze the blood of patients with sarcoma, seeking distinctive ‘signatures’ that reveal their tumour’s specific mutations. With this detailed insight into the tumour’s characteristics and weaknesses, oncologists will be able to develop a blood test that allows them to diagnose rare types of STS with precision, and better guide treatment decisions.
This simple and minimally invasive ‘liquid biopsy’ could spare patients from undergoing invasive surgical biopsies to diagnose their tumour. Patients will be able to start treatment sooner (and with less stress to their body), and oncologists will be able to monitor the patient easily, using a simple blood test to determine if the tumour is shrinking.
On behalf of Canadian patients and families living with sarcoma, we’re asking you to join us by contributing towards our goal of $100,000. Donate on our donate page or send a cheque to our mailing address to be a part of the future of sarcoma care.
There's always a need for more educational materials, and we're pleased to launch our updated SCFC Sarcoma Infographic. Revised to include up-to-date information, we've started distributing to clinics across Canada in order to help patients and their families learn more about this rare cancer. If you are interested in obtaining a physical or PDF copy please send us an email at email@example.com.
SCFC is proud to support important strides being made across Canada! Some recent work on Alveolar Soft Part Sarcoma has now been published in the prestigious journal entitled Cancer Immunology Research, a publication of AACR (American Association for Cancer Research). Although involving a small number of patients, this is a phenomenal paper that may hopefully be used to justify access to checkpoint inhibitors for these patients.
New research provides a glimpse into what Canadians know about Sarcoma cancers. Read the full press release, just in time for Sarcoma Awareness Week!