Hilary Becker, an advocate for Cystic Fibrosis Canada and the Quest4CF, in Toronto on Oct. 14, 2020.Fred Lum/The Globe and Mail
The organizers: Cystic Fibrosis Canada
The pitch: Quest4CF
The COVID-19 pandemic has posed a challenge for children hoping to head out for Halloween. But Cystic Fibrosis Canada has come up with a trick-or-treat fundraising event for families that fits with today’s physical-distancing realities.
The event, called Quest4CF, takes place in communities across Canada on Sunday. Participants will travel in their cars to various checkpoints to solve a series of clues and riddles in return for treasure. Everyone is encouraged to dress up and physical-distancing measures will be in place. There’s a $60 fee for each vehicle and donors can sponsor individual teams.
“We’ve really pivoted as an organization with everything happening with COVID-19,” said Sabine Climans, the co-ordinator for fund development and administration at Cystic Fibrosis Canada. “And we wanted to come up with a socially distanced event that all participants could partake in, especially those with Cystic Fibrosis.”
The charity is hoping to raise $75,000. It also wants to use Quest4CF to boost public awareness about a new treatment called Trikafta. It’s a combination of three compounds that has shown remarkable results in the United States and Europe but isn’t widely available in Canada. The drug’s manufacturer, Boston-based Vertex Pharmaceutical Inc., has been reluctant to apply for approval in Canada because of concerns about the government’s drug-pricing regime.
“It’s very hard to sit in Canada when you see people in the States who have access to this drug and their lives have just completely changed,” said Hilary Becker, 28, who was born with Cystic Fibrosis and lives in Toronto. Ms. Becker, who works as a behaviour therapist, takes about 30 pills a day and has close to two hours of daily treatment.
She and others with Cystic Fibrosis are lobbying the government and Vertex to work together to find a solution. She also hopes that events like Quest4CF will help people learn more about the drug. “There are so many people in Canada who have just so much to live for and they are literally dying because they can’t get this drug," she said. "It’s so painful to watch.”