More than 70 communities across Canada hosted fundraisers to help Cystic Fibrosis Canada (CFC) on Sunday.
In Greater Victoria, 160 participants joined together for the Walk to Make Cystic Fibrosis History in the 15th anniversary of the event. Last year, the walk raised $20,000 locally.
This year’s fundraiser is in line to match that goal, said Lynne Rozenboom, CFC’s manager of chapter fund for the B.C. and Yukon region. Volunteers for the event set up barbecues and offered face painting sessions. Some donned superhero costumes and guided people through warm-up exercises.
Sarah Gibson, 26, and her mother Mary March said they’ve participated in the charity drive since Gibson was one, when the event went under a different name.
Gibson was diagnosed with cystic fibrosis when she was three days old. The chronic genetic disease affects the digestive tract and lungs, causing mucus buildups that seriously affect breathing and increases the chance of chest infections among multiple other issues.
Just over a year ago, Gibson dealt with lung bleeds that required major surgery. Now, thanks to an oral medication, she has been a year out of the hospital, she said. Before taking the drug, she was in and out of the hospital “every couple of weeks.”
Gibson is able to get the drug from a compassionate care program. However, not everyone has that option.
According to CFC, the drug Gibson is taking costs around $250,000 per year.
“Without support from private or public drug plans, it is inaccessible,” their website states.
Yet positive strides have been made throughout Gibson’s own journey, which is cause for hope, March said. The life expectancy for people with cystic fibrosis is continually going up over the years, she noted. Around the time Gibson was born, people with the disease were expected to live until they were 23. For Canadians today, this number is closer to 53 years.
The progress is thanks to fundraising efforts such as the run, which helps raise money for research, March said. “One day, CF will stand for cure found,” Gibson added.
There are “new rules to this game,” because of research and new medications, Rozenboom noted. Her son wasn’t diagnosed until he was two, but in recent years, newborns in B.C. and Yukon have been receiving blood tests to check for 24 treatable diseases, of which cystic fibrosis is one.
The fundraisers put on by people who came before her, made Rozenboom’s son’s life easier, who currently is 38, she noted.
Rozenboom said she took a bigger role in CFC feeling like the opportunity was there to advocate for people living with rare diseases and to help make it possible for clinicians and researchers to find a cure.
“A number of our physicians are saying they believe that it will be in our lifetimes,” she added.
According to the CDC, more than 4,300 Canadians live with cystic fibrosis.