Our History

40 years of solidarity, listening, and action

A journey guided by people, supported by the community, and focused on the future.

From the Provincial Committee for Adults with Cystic Fibrosis to Living with Cystic Fibrosis

40 years of continuous history

At the beginning, Living with cystic fibrosis (Vivre) had another name: the Provincial Committee for Adults with Cystic Fibrosis (CPACK). Founded on 17 October 1985, this committee was created to meet the specific needs of adults with cystic fibrosis, at a time when their life expectancy was just over 23 years old.

Six adults with cystic fibrosis — Mario Gagné, Lise Tardif, Dora Tardif, Dora Dubé, Nancy Lefrancois, Marc Fortin and Serge Benjamin — accompanied by Laval de Launière, guidance counsellor, played a decisive role in creating this committee. Their objective: to better support the transition to adult life, at a time when few people reached this milestone.

Laval de Launière joins the organization

Laval de Launière became the first General Director of the CPAFK. A deeply respected figure in the community, he led the organization with passion and dedication until 2015, when it took a new turn by becoming Living with Cystic Fibrosis (Vivre).

This name change marks an expansion of the mission. Vivre is committed to representing, supporting and defending the interests of adults affected, while reflecting the new realities of the disease and those living with it.

From the very beginning, the organization managed to mobilize the majority of adults with CF in Quebec, thanks in particular to the financial support of the Canadian Cystic Fibrosis Foundation and of the Quebec Cystic Fibrosis Association. The work of social workers in CF clinics helped build a membership base that includes virtually all CF adults in the province — a major advance in the visibility and reach of the new organization.

On the photo: Laval de Launière

Two founding pillars: Thrive - Living Well magazine and the opening of a Head Office

Two events consolidate Vivre's place in the Quebec community landscape: the launch of the magazine Thrive - Living Well and the development of a permanent space at 629 Prince-Arthur Street West in Montreal.

Published once a year, Thrive quickly became a tool for education, information and mobilization, both for those affected and for the workers who support them. It became the organization's official magazine, and embodied one of the essential aspects of its mission: popular education.

Setting up in a fixed location, on the other hand, gives the organization a solid basis for organizing its activities, pooling the efforts of its members, and developing a strong sense of belonging. It fully supports the psychosocial mission of Vivre.Vivre.

Tomy-Richard: A Visionary Leader

In 2013, when Laval de Launière retired, Tomy-Richard Leboeuf McGregor took over the management of the organization. Laval had provided a solid foundation, and Tomy-Richard brought it new energy.

An outstanding visionary and communicator, Tomy-Richard propelled the organization into the digital age, consolidated its democratic structure, and established several programs and help funds that are still active today. Under his leadership, the transition from CPAFK to Vivre became a reality. His premature death has left a lasting mark on the collective memory of the CF community.VivreVivre became a reality. His premature death has left a lasting mark on the collective memory of the CF community.

The COVID-19 challenge

In March 2020, the COVID-19 pandemic hit hard. Vivre was on the front line in responding to a worried and vulnerable community. Calls poured in from the CF community : What are we entitled to? How can we protect ourselves? What should wedo?

In a context of governmental uncertainty and chaotic communication, the Vivre team, led by Charlène Blais and Pierre-Alexandre Tremblay, redoubled their efforts. Charlène brought a clear and unifying vision, and Pierre-Alexandre became a real spark plug in organizational development.

With the support of emergency grants, mobilized volunteers and a dedicated team, the organization navigated this crisis with agility and resilience. At that point, Sarah Dettmers assumed the presidency, supporting the coordination of a rapid and humane response to the urgent needs of the community.

A Vision for the Future

Today, Vivre relies on solid financial foundations and sees the emergence of a new generation ready to take over. The evolution of treatments — especially with the arrival of modulators such as Trikafta, Alyftrek or Symdeko — is profoundly changing the reality of people with CF: life expectancy is rising, life prospects are expanding.

The organization is adapting to keep up with the pace of this evolution. It must reach varied profiles, in very different life contexts. In a context of privatization of the health system and the weakening of public services, it must also defend more than ever the rights of people with CF, their loved ones and their families. Its general regulations now include children and the immediate environment, testifying to this desire for wider inclusion.

The future is uncertain in some ways — but it is also hopeful. New challenges are emerging, but also new opportunities. At 40, Living with Cystic Fibrosis looks ahead with lucidity, ambition... and profound fidelity to its primary mission: to accompany, support and bring together people living with cystic fibrosis, throughout their journey.