CONSIDER CIRCULATING: Ewings Cancer Foundation of Canada (ECFC) has produced a documentary for wide distribution to educate non-oncology physicians, coaches, teachers and others on the importance of early detection of Ewing sarcoma and the impact of misdiagnosis.
*Approx 47 minutes. May not be suitable for young viewers.
Ewing sarcoma is difficult to identify and often gets misdiagnosed allowing the cancer to proliferate beyond treatable stages. If you read the personal stories on the ECFC website, there is recurring theme of misdiagnosis (e.g., sport or dance injury). Early detection is critical to avoiding metastasis, which is associated with a drop from 50-70% survival rate to an unacceptable 10-15% survival rate.
ECFC has produced this 47 minute documentary for wide distribution to help educate on realities of Ewing sarcoma. Find below a letter of introduction from ECFC.
What do you know about Ewing sarcoma? Most know very little and, shockingly, this can also be true about health professionals. It is a nondiscriminatory, aggressive cancer that primarily attacks the bones and soft tissue in younger people but can affect anyone at any age. Characteristically one of the most painful forms of cancer, tragically Ewing sarcoma is difficult to identify and often gets misdiagnosed allowing the cancer to proliferate beyond treatable stages. Currently, Ewing sarcoma is being treated successfully in 50-70% of cases identified using dated chemo regimes that are more than 35 years old. As you know, once it starts to spread, survival rates plummet to just 10-15%. We know old chemo regimes are damaging young, growing bodies and endangering the survivors with their lifelong health complications. This, in turn, becomes a burden on an already stretched healthcare system. There is no measure on the physical, emotional and financial tole of their families.
The Ewings Cancer Foundation of Canada (ECFC) is a registered charity who has spent the last 10 years fighting tirelessly to raise awareness and ultimately for the eradication of Ewing sarcoma (ES) through fundraising efforts sponsoring critical research and development initiatives in Canada. The ECFC was formed by Tina Pernica and her husband Bernie in 2008 after the death of their 19 year old son, Reid. Tina and Reid spent many hours combing the internet, in vain, for information on ES to make sense of what was happening to him before he passed away. To their surprise, there was very little out there and more surprising was the lack of knowledge amongst the healthcare community. This was unacceptable to them and Reid vowed that should he survive, he would make a difference in Canada, increasing awareness and research in Ewing sarcoma. After his death, his parents carried on his pledge and today the ECFC has funded 4 critical research grants through a partnership with C17 Council, the Children’s Cancer and Blood Disorders group in Alberta, with a 5th coming soon
Over the past 10 years, the ECFC have learned from patients this cancer is most often overlooked as it mimics growing pains, sports injuries or an inflammatory condition, delaying diagnosis with devastating consequences. We knew we had to do something about increasing awareness within the medical community. In 2017, the Ewings Cancer Foundation of Canada produced Make It Stop, the first and only professional feature length documentary (47 minutes) about Ewing sarcoma in the world to date. Shot and produced in Canada, it is the very first educational tool created for front line health care practitioners who may or may not be familiar with ES, including chiropractors, sports and massage therapists, radiology and the rheumatology communities to name a few. Featured in this film are Drs. Adam Shlien, David Malkin and Abha Gupta at SickKids, Toronto; Dr. Jason Berman in Dalhousie University, Halifax; and Dr. Poul Sorensen at the BC Cancer Care Centre, Vancouver.
Please view this film here: https://www.youtube.com/watch?v=WYavC9GZpeg. We invite your comments and feedback once you do! We know that knowledge is power and with that power we can help stop this devastating cancer from taking the health and lives from society’s most vulnerable, the young. We ask you to include this documentary in your newsletters, industry publications, medical workshops, conferences, lectures, and/or symposiums and educational events for all registered rheumatologists across Canada.
Early detection is vital and can make the difference between life and death.
It is our hope we can work together to increase awareness for Ewing sarcoma especially within the Rheumatology Sector.
With sincere appreciation,
President & Founder
Ewings Cancer Foundation of Canada
Charitable Registration # 83833 0025 RR0001
Did you know that 2016 is Ewing Sarcoma Awareness Year? Check out out the July Ewings Cancer Foundation Canada Newsletter http://www.ewingscancer.ca/newsletters/NewsletterJuly2016.pdf
What will you find at www.ewingscancer.ca?
- powerful stories of those who have been affected by Ewing sarcoma
- summaries on the research ECFC supports in partnership with C17
- information on The Ewings Cancer Foundation of Canada (ECFC) 7th Annual Rally for the Cure, a charity fundraising event featuring an Air and Car Rally with a treasure hunt theme
- a downloadable pamphlet on the signs and symptoms Ewing Sarcoma
Please share using the hashtags #StartTheConversation and #MakeItStop in social media!