It was a sunny Sunday that greeted those walking in Bell Park to ‘Make Cystic Fibrosis History’ on May 29, happily enjoying the first in-person walk in two years.
The main fundraising and awareness opportunity for the Cystic Fibrosis Canada, this year’s walk was hybrid, with some participants choosing the virtual option, but everyone at the event was thrilled to be back together. In fact, the theme of the event was “Family Reunion in the Park.”
The focus of the event was awareness, but also, to literally make Cystic Fibrosis history.
“We are working towards the ultimate goal of finding a cure for cystic fibrosis, so that no more lives are lost to this disease,” said Robert McCarthy, president of the Sudbury chapter of Cystic Fibrosis Canada. He also told Sudbury.com that in addition to finding a cure, the walk is about advocating for affordable and accessible medications.
McCarthy has worn many hats for the organization, but says that his driving force is always the people. “I know many people across Canada that have cystic fibrosis, they are the strongest people I've ever talked to in my life. And I'm doing this for them.”
Organized by the Greater Sudbury Kinette Club, who are “Partners for Life with Cystic Fibrosis Canada,” the turnout was wonderful, said Kinette Club representative, Jeannette Piché.
“It’s turned out so well,” said Piché. “The goal of the walk is to raise as much money as we can for cystic fibrosis research, and new treatments.”
There are a few treatment options at present, and they are consistently raising the quality of life for people living with Cystic Fibrosis. But Piché said they can often be expensive, and difficult to access. But they do work, and they work well.
“Just today, I found out that one of our CF girls, Janessa, couldn't make it today because she is in a horse-riding competition,” she said. “And it's because of this drug that she's taking, Trikafta.” Janessa’s team was proud to represent her at the event.
Cindy Caron is a long-time volunteer with the Greater Sudbury Kinette Club, as was her mother. She is now the CFO and service director. She told Sudbury.com that the strides made in the many years Kin Canada and Cystic Fibrosis Canada have partnered mean they have raised the life expectancy for someone with CF a year for every year they’ve worked together.
“Back in the day, the average lifespan for someone with CF was four. Now, in our 50th year of being in partnership, the average age is 55.”
All those Sudbury.com spoke to at the event expressed the need to have affordable and accessible treatment options. Caron said that not only is there a small window of opportunity to begin treatment with Trikafta, but also, the need to travel.
“Living in the North means that if they do become sick, they have to go to Toronto,” she said. “There's St. Michael's or SickKids, and they have special units for CF, but not here.”
The awareness and funds raised at these walks does make a difference, said organizers. The focus of the campaign this year is centred around access to Trikafta, considered a life-changing drug for those aged six to 11. Last year, Cystic Fibrosis Canada advocated for access to the drug for Canadians 12+ and in less than six months after draft recommendations from drug review bodies, every Canadian province and territory committed to fund Trikafta.
And in addition to raising awareness, McCarthy advised anyone interested in supporting the cause to get out and vote. Not only that, but to ensure that advocacy goes beyond the ballot box.
“I encourage people to hold the new MPPs across Ontario, and whoever whichever party forms the next government, accountable,” he said. “Keep making the phone calls about access to medications for Cystic Fibrosis patients, but also, to advocate for a rare disease strategy that will help all Canadians.”
Jenny Lamothe is a reporter with Sudbury.com. She covers the diverse communities of Sudbury, especially the vulnerable or marginalized, including the Black, Indigenous, newcomer and Francophone communities, as well as 2SLGBTQ+ and issues of the downtown core.