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Ten years ago, a passionate group of families, friends, and advocates took on the Great Wall of China in the name of cystic fibrosis research. Now, Geneviève and Sébastien, the organizers and parents to 16-year-old twins with cystic fibrosis are back – with new challenges, a new generation of runners, and the same unshakable drive to create a world without limits for people living with CF.
As the 10th anniversary of Defibrose 2014 fundraiser approached, organizers found themselves reflecting on how far cystic fibrosis research had come – and how far there is still to go. Although life-changing treatments like Trikafta have brought hope, the goal remains a cure.
That’s what inspired the Defibrose 2026: Kenya Experience – a 25 km run through the Kenya savannah, designed to push boundaries and raise critical funds for CF research.
“We wanted another extraordinary challenge that would inspire people to dream,” the organizers shared.
With the help of their close friend Blaise, who had previously run the same route, Kenya emerged as the perfect destination. The family has set an aggressive goal, hoping to raise $200,000 in support of Cystic Fibrosis Canada.
But this event is more than scenery and endurance – it’s about resilience. And few people embody that more clearly than Jeanne and Camille, the daughters of the event’s organizers. Now teenagers, both girls live with cystic fibrosis and are training to take part in the run themselves. “We want to run for our cause,” they said when they first heard about the idea.
The Kenya Experience is a continuation of that philosophy. It’s a powerful reminder that people living with CF, and their loved ones, are not giving up. They are pushing forward, training hard, raising awareness, and showing the world what it means to live with purpose and hope.
Of course, the goal is to raise as much money as possible. But for this team, success isn’t measured in dollars alone. “All the education, all the conversations, all the preparation – it already makes this project a success,” they explain. “It’s about giving without expecting anything in return.”
The organizers hope this next Defibrose event will inspire a new wave of community-led initiatives – just as their 2014 adventure did. “We’ve seen a snowball effect,” they say. “It’s amazing to witness the ripple of impact.”
Their advice for other families affected by CF? Stay resilient. Speak up. And keep supporting research – because every dollar brings us closer to a cure.
With the Kenya Experience on the horizon and two determined teenagers at the starting line, the Defibrose team is once again proving that no distance is too far when it comes to fighting for a better future.