Go for the gold this monthWednesday, September 04, 2013 by: Darren Taylor
Do you know what a gold ribbon in September represents?
Sudbury-based Northern Ontario Families of Children with Cancer (NOFCC) wants everyone to know gold is the colour that represents Childhood Cancer Awareness Month.
NOFCC Volunteer and Fund Development Coordinator Dayna Caruso will be on hand at Sault Ste. Marie City Council’s meeting Monday, when Mayor Debbie Amaroso will officially proclaim September as Childhood Cancer Awareness Month.
Speaking to SooToday.com by telephone from Sudbury Wednesday, Caruso said: “The proclamation will be inviting citizens to recognize this as a real problem in our communities and deserves more recognition.”
The public will be encouraged to support NOFCC with donations and wear a gold ribbon throughout September.
Caruso told us: “Everybody knows that pink represents breast cancer and October is the month for that, and that Movember (November) raises awareness for prostate cancer, but we really want the public to know that gold is the colour that symbolizes Childhood Cancer Awareness Month in September.”
“We want to reach the general public, who don’t know about it.”
The NOFCC has been in operation for 15 years, while receiving very little recognition for its efforts.
It is anticipated Sault Ste. Marie families with children battling cancer, and the children themselves, will be in attendance Monday.
The NOFCC is to be highly commended for its management philosophy and for the services it provides for cancer-battling children and their families.
Caruso’s position is the only paid position within the organization, funded by the Ontario government.
That funding, Caruso said, is running out, and while the group is seeking private sector funding to keep that job going, the NOFCC is seeking to broaden its volunteer base across northern Ontario communities.
“100 percent of the money raised through NOFCC fundraisers goes directly back to families in the communities we serve,” Caruso said.
Unlike so many not-for profit groups, Caruso said: “We don’t like taking money off the top to pay for a lot of staff members.”
With a large group of volunteers in Thunder Bay, Caruso said: “We’re really looking to develop our volunteer sector to get families in our communities actively doing fundraising on our behalf.”
“We have a group in Sault Ste. Marie that put on a Mother’s Day Brunch this past year that was very successful and which raised nearly $10,000 for us, and we’ve also been informed we’ll be receiving help from Tim Horton’s.”
Caruso praised the efforts of Ken and Sandra Belanger as fundraisers for NOFCC in Sault Ste. Marie over the past two years.
The NOFCC serves communities from Parry Sound to the Manitoba border and offers 12 support programs to meet the needs of families affected by children with cancer, many of them associated with the staggering cost of medical travel.
“We used to provide families with support for gasoline and food, but other parties were stepping up to help with that, so we help with electricity bills and telephone bills, things that tend to be forgotten about while families are out of town while their children are receiving treatment,” adding that some families do not have the medical coverage to pay for oral chemotherapy drugs not covered by OHIP.
At the end of every month, and after some paperwork, the NOFCC will help a family claim up to $465 for help with paying the bills.
Valuable tutoring services are provided for children.
Caruso said: “Two-thirds of children, after treatment, end up with some sort of cognitive deficiency or learning disability, so we have tutoring available for our children by a qualified tutor, and we can help with up to $1,000 a year for that.”
A $1,000 bursary is also set up for children to be put aside for postsecondary education.
Another valuable service is NOFCC’s parking reimbursement program.
Parking at Sick Kids Hospital in Toronto is $20 a day.
NOFCC will help with that burden, as well as assist with taxi fares to and from hospital.
Sadly, some children will end up in palliative care.
“Once a child reaches that stage in their illness, we’ll arrange for meals to be delivered to their family by whoever they choose, along with home maintenance and cleaning and yard cleaning, so the family can concentrate on their child.”
A support group for families with children with cancer meets twice a month in Sudbury, but Caruso hopes to see that expand to other Northern communities.
For the children themselves, who are often out of school for a year or more while undergoing cancer treatment, the NOFCC’s Keep Connected program involves the lending of laptops so that children can keep up with school work, as well as stay in contact with their teachers and schoolmates.
Funding for all these services comes from fundraising.
Caruso said the recent Miss Northern Ontario Pageant raised $46,000 for NOFCC, while a Father and Daughter Ball in Sudbury, in which girls from six to 12 years old dressed in fancy gowns dined with their fathers and enjoyed entertainment by acrobats, raised $27,000 for the organization.
Caruso and the NOFCC are aiming not only for greater awareness and financial support to help families of children affected by cancer, but also a determined effort by bureaucrats to put more money into developing more effective treatment for children stricken by cancer.
“The Canadian Cancer Society only puts 2.4 percent of all their research dollars into pediatric cancer research, and the Ministry of Health only puts 3 percent of their overall cancer research budget into pediatric cancer research,” Caruso said.
“That’s just not enough.”
“The treatments these kids go through are so intense, and the treatments haven’t been updated over the years.”
Caruso said: “We need more effective treatments that don’t leave these kids with problems.”
“Some of them will be infertile, or have heart, lung or kidney problems, or learning disabilities.”
Caruso said: “There needs to be more research, and with that research there’ll be a bigger success rate.”
In addition, the NOFCC has another cherished dream.
“Long term, we really hope that eventually there will be a Northern Cancer Care Centre for children,” Caruso said.
“In Sudbury there are only two beds available for children.”
“When a child is diagnosed they automatically are sent to Ottawa, Toronto or London to receive the beginning of treatment, but once they reach maintenance stage, when the waters have calmed a bit for them, then they are sent to Sudbury for very, very minimal treatment.”
“We do very little here. What we’re hoping for is a children’s cancer centre in the North,” noting the enormous cost involved for families travelling from centres such as Sault Ste. Marie or Thunder Bay to Ottawa more than once a month.
Meanwhile, Caruso said national landmarks such as Niagara Falls, the CN Tower and the Peace Bridge will be promoting Childhood Cancer Awareness Month by shining gold lights.
“There is a national awareness happening, and we encourage Sault Ste. Marie and all of Northern Ontario to be part of that campaign.”