A Legacy of Care: Louise’s 40-Year Journey with the CF Community

When Louise began her nursing career at Toronto’s Hospital for Sick Children (SickKids) in 1982, she had no idea that cystic fibrosis (CF) would shape both her professional and personal life for decades to come.

“I started in the Respiratory Medicine clinic in 1985,” Louise recalls. “At the time, there was no adult facility for people with CF, so we cared for both children and adults. Those were hard but rewarding years.”

Louise quickly became a pillar of the CF care community. As a nurse practitioner, she was often the first-person new families met when their child was diagnosed, guiding them through the difficult times of treatment plans, hospital stays, and the daily ups and downs of CF. “I loved being that first point of contact,” she says. “Parents would call me not just about medical concerns, but baby questions as well. I wanted them to feel supported and understood.”

Louise’s profession brought her into close partnership with Cystic Fibrosis Canada. She became the first coordinator of the Cystic Fibrosis Nurses Interest Group, helping connect and empower nursing teams across the country. “We shared our stories, supported each other, and built a national network of caregivers who could pick up the phone anytime,” she says.

Her dedication extended beyond the hospital. Louise and her late husband Kevin – who lived with CF – became active volunteers and advocates. Kevin served as president of the Peel Chapter, and together they organized fundraisers, spoke at events, and strengthened connections within the CF community.

“CF Canada is part of my family,” Louise says simply. Even after retiring in 2018, she continued to volunteer, helping organize events. “I’ll stay involved as long as they want and need me,” she adds.

Over her 40 years in CF care, Louise has witnessed extraordinary change. She still remembers the excitement of 1989, when the CF gene was discovered. “We worked closely with the research team, drawing blood from patients and parents. When they announced the discovery, it felt like a victory for all of us.”

From there, clinical advances followed – from less invasive diagnostic tools to improved physiotherapy methods and inhaled antibiotics that have helped to extend lives. Louise also helped introduce newborn screening for CF in Ontario, ensuring earlier diagnosis and treatment for babies.

And then came modulator therapies – a breakthrough she calls “transformative.”

“These drugs have completely changed the outlook for some people with CF and their families,” she says. “They’re not a cure, but they give us the hope we never had decades ago.”

Louise’s hope for the future is clear: “I want to see everyone with CF – no matter their mutation – have access to modulator therapies or a treatment that works for them. And I hope governments will prioritize funding these life-changing drugs without delay.”

She’s also excited by the possibilities of CRISPR technology and gene therapy. “I hope to see a cure in my lifetime,” she says. “We need to keep raising funds and awareness until we reach that final goalpost.”

For Louise, the vision of a future where all Canadians with cystic fibrosis live without limits is deeply personal. Her husband, Kevin and his sister, Andrea, both lived with CF and passed away many years ago.

“Kevin saw no limits,” Louise reflects. “He was active, optimistic, and loved life. He showed me how to make a difference – and that’s what I hope for every CF family. To live long, full lives and use their strength to help others.”

While incredible progress has been made, Louise emphasizes that the journey isn’t over.

“We’re not there yet,” she says finally. “These new drugs are not a cure, many still don’t have access, and some people do not respond to them at all. CF is still a fatal disease. We need to keep working and raising money until we can finally celebrate the day it’s cured – together, as one global community.”

Louise’s story is a powerful reminder of what’s possible when compassion and commitment meet hope. Help carry that hope forward by supporting Canadians living with cystic fibrosis this holiday season.