Sault Mayor Christian Provenzano, assisted by Terrance Boston, 10, a local child currently in remission after battling cancer, and Dominic Campioni, whose daughter Angela passed away from childhood cancer, raised the Northern Ontario Families of Children with Cancer (NOFCC) flag at the Civic Centre Monday, prior to proclaiming September to be Childhood Cancer Awareness Month in Sault Ste. Marie.
An audience of people, many affected by childhood cancer, was in attendance.
“Cancer is a cruel and indiscriminate disease under any circumstances, but is at its cruelest when it afflicts our children,” said Provenzano, visibly moved at Monday’s flag raising, having suffered the loss of a friend, Brandon Simonini, to childhood cancer when the two were in Grade 8.
“It’s difficult. I’m still very close with all of his siblings and his mother. I’m still involved in their lives and they're lovely people,” Provenzano told SooToday.
“I want to stand with you and honour the memories of the children who have been taken before their time, and the children who continue to fight. We want the families and the children in our community to know they are not alone in this battle,” Provenzano said to Monday’s audience, thanking NOFCC for their support in the battle against the disease.
Northern Ontario Families of Children with Cancer, based in Sudbury, helps families with children with cancer across northern Ontario with their immediate financial, emotional and educational needs.
“Unfortunately for families in our geographical region, they have to travel for treatment to other centres such as Toronto, London, Ottawa or to the U.S. Our organization strives to reduce those financial burdens they face,” said Dayna Caruso, NOFCC executive director, speaking to the group in attendance.
“The Canadian Cancer Action Network estimates families of children with cancer incur an average expense of $28,000 (for travel, food, accommodation and other expenses) in the first three months following a child’s diagnosis and obviously this situation is much, much more for our northern families who don’t have childrens hospitals here,” Caruso said.
Caruso shared an encouraging story of how pressure from NOFCC and other advocacy groups led to approval last week, by Health Canada, of CAR T-Cell therapy, an expensive but proven treatment for cancer in children for an eight-year-old Canadian boy named Ryken Covino.
Disagreeing with claims from the medical establishment that childhood cancer is rare, Caruso said “lots of childhood cancer information is sugar-coated to make it look easy and straightforward. Sadly, more northern children develop cancer than anywhere else in our province. The Ontario average is 150 cases per million, and the northeast average is 175 cases per million,” Caruso told Monday’s audience.
- In Canada, one in 285 children will be diagnosed with cancer by the time they reach their 20th birthday, one in five succumbing to the disease
- 10,000 children in Canada are currently living with cancer
- 300,000 children are diagnosed with cancer every year worldwide
- 250 children die from the disease daily, more than AIDS, asthma, cystic fibrosis, congenital abnormalities and diabetes combined, the incidence of childhood cancer having jumped by 29 per cent over the past 20 years
“Does that sound rare to you? Major cancer organizations claiming to fund research provide anywhere from three to five per cent of funding to all childhood cancers, the Ministry of Health provides three per cent of all their cancer research dollars to pediatric cancer and, as things stand today, the National Cancer Institute provides four per cent to research to try to cure all 12 types of childhood cancer, and 200 subtypes.”
“It’s not enough,” Caruso said.
“It’s not rare. It’s what we’re led to believe,” Caruso told us after the flag raising.
“Greater awareness brings more funding and there are organizations that fund childhood cancer research. (California-based) St. Baldrick’s Foundation does childhood cancer research, and if we’re funding the studies these people are backing up, that’s how we’re going to find cures for our children.”
Caruso said those who donate to Canadian cancer groups with childhood cancer in mind must specify they want their donations to go to childhood cancer research.
“We need to know where our money is going, and specify.”
More information on NOFCC can be found on the organization’s website