Never heard of Ewing sarcoma? Be grateful. It is a cancer of the bone and soft tissue, affecting mostly kids and young adults but can strike anyone, anywhere in the body, at any age. Researchers pinpointed a chromosomal translocation as the cause. Ewing sarcoma is not genetic, cannot be prevented and there is no screening. It is simply a "bad luck" cancer. Diagnosing Ewing sarcoma has proven to be very difficult and is all too often mistaken for growing pains or sports injuries. Survival rates plummet once this deadly, aggressive cancer spreads.
Reid Pernica was 17 years old in 2005 when he was diagnosed with Ewing sarcoma. He endured ankle pain for a number of years plus many doctor visits before the cause was found. The pain worsened over time and eventually tumours were discovered in his ankle, sinus cavity, rib cavity and pelvis. "We were waiting for next sentence 'but there's a cure' -- but that next sentence didn't come," said his mom, Tina Pernica. Reid and Tina were astonished at the lack of support groups and the short supply of research dedicated to Ewing sarcoma. They both knew that had to change -- a seed was sown.
Reid Pernica dreamed of becoming a pilot in the Canadian Air Force and was in the application process when he lost his battle with Ewing sarcoma on Nov. 25, 2007 at the age of 19, but not before realizing his desire to become a pilot, made possible through his job at Buttonville Municipal Airport in Markham, Ont. Reid's story touched so many, including Loretta Lau-Lowerison who worked with Reid. During his funeral, she and her husband Ryan, performed a flyover at the cemetery in their Cessna, tipping their wings as Reid was laid to rest -- a moment no one in attendance will ever forget.
Tina, who had no background in health care, decided to start the Ewing Cancer Foundation of Canada with her son before he died by galvanizing hundreds of volunteers across the country to launch a foundation that would educate Canadians on this disease which no one seemed to know much about and, importantly, to raise funding for Ewing-specific research. Less than five years later, with more than a quarter million dollars raised, the Ewings Cancer Foundation of Canada is a registered charitable organization. Of late, they co-funded a Canadian research project whose recent remarkable findings were published in Cancer Cell, a distinguished medical report highlighting exceptional, significant cancer discoveries. Presently, they are busy co-funding a second and third grant to Canadian researchers. Doctors say money raised by this foundation is badly needed because there are very few labs in North America that are dedicated to researching Ewing sarcoma.
This is an inspiring story that isn't just about a rare cancer, but more about a mother's passion and dedication to her son and now a leader of a huge community of survivors and parents who lost their children, many of whom are taking on the medical establishment themselves and achieving great results. They are educating not only the general public but also family doctors and other front line health professionals. They have produced an informational pamphlet that is bound for every family physician's office in Canada, in hopes they will consider Ewing sarcoma as the cause of unexplained pain, hastening a diagnosis to prevent unnecessary death.
They pay for all this as you'd expect, the hard way, through fundraisers either by third party participants or through their annual Rally For The Cure, a unique "wheels and wings" event. This year boasts the sixth annual event to be held on September 13. It's an air and car rally with an "urban treasure hunt' theme and there is nothing else like it in Canada open to the public. That's just the way this group rolls!
There are two very important reasons for the format -- air rally because of Reid's passion for aviation and car rally because of Tony Ferragine's love for cars. Tony was the brother and best friend of CityTV Breakfast Television's "Frankie Flowers." Ewing sarcoma stole the life of 22-year-old Tony in 1998. Frank Ferragine has been the MC for this event since it's inception in 2010.
Cars and planes start their routes simultaneously -- cars from the York Region of the Greater Toronto Area and planes from six participating municipal airports in Southern Ontario.
Smart cars to Ferraris participate in the car rally on an equal playing field. It is a battle of brains versus brawn. Teams of a driver and navigator are given a booklet with a list of questions and directions to follow to be submitted to timekeepers at the finish line. Air teams consist of a pilot and co-pilot who are given a choice of routes to follow, starting instructions and colour-coded questionnaires to be completed and collected upon arrival at Buttonville Airport by a review panel.
"Our loss of Reid was devastating." Tina attests. "It was infuriating to learn how little research has been completed since its discovery in 1921. How can physicians treat the disease without greater understanding?"
Reid's legacy lives on, one Tina believes he would be proud of. "He'd be thrilled to know Ewing sarcoma research is actually happening and is under the microscope right here in Canada. He was a true Canadian."
More information on the ECFC or Rally For The Cure can be found at www.ewingscancer.ca or www.rallyforthecure.ca, Facebook, Instagram and Twitter.
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