History of Living with Cystic Fibrosis

40 years of continuous history

Initially, Living with Cystic Fibrosis (VAFK) had a different name: the Provincial Committee for Adults with Cystic Fibrosis (CPAFK). Founded on October 17, 1985, this committee was created to meet the specific needs of adults with cystic fibrosis, at a time when their life expectancy was barely longer 23 years.

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

The entrance on the scene of Laval de Launière

Laval de Launière becomes the first director general of the CPAFK. A deeply respected figure in the community, he leads the organization with passion and dedication until 2015, moment when it takes a new turn by becoming Living with Cystic Fibrosis (VAFK).

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

From the very beginning, the organization managed to mobilize the majority of adult CF in Quebec, in particular thanks to the financial support of the Canadian Cystic Fibrosis Foundation And of theQuebec Cystic Fibrosis Association, while affirming its independence and its own mission.

The work of social workers in cystic fibrosis clinics makes it possible to build a membership base that includes virtually all adult CF in the province — a major advance in the visibility and reach of the organization.

Two founding pillars: Health You Well and the head office

Two events consolidate VAFK's place in the Quebec community landscape: the launch of the magazine Health You Well and the development of a permanent premises At 629 Prince-Arthur Street West, in Montreal.

Published once a year, Health You Well quickly becomes 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 was an essential pillar of its popular education mission.

The development of a fixed space offers the organization a solid basis for organizing its activities, pooling the efforts of its members and developing a strong sense of belonging, fully supporting its psychosocial mission.

Tomy-Richard: a visionary leader

En 2013, while Laval de Launière is retiring, Tomy-Richard Leboeuf McGregor takes over the management of the organization. After inheriting a solid foundation, he is injecting new energy into VAFK.

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

The COVID-19 challenge

En March 2020, the COVID-19 pandemic is hitting hard. VAFK is on the front line in responding to a worried and particularly vulnerable community. Requests are flooding in: rights, protective measures, access to services.

In a context of uncertainty and sometimes contradictory communications, the VAFK team, led by Charlène Blais And Pierre-Alexandre Tremblay, redouble our efforts. Charlène brings a clear and unifying vision, while Pierre-Alexandre acts as a driver of organizational development.

Thanks to emergency grants, the commitment of volunteers and a dedicated team, the organization is navigating this crisis with agility and resilience. During this period, Sarah Dettmers chairs and supports the coordination of a rapid and humane response to the needs of the community.

A vision for the future

Today, VAFK is based on solid financial foundations and is seeing the emergence of a new generation ready to take over. The evolution of treatments — especially with the arrival of modulators such as Trikafta — profoundly transforms the reality of those affected: life expectancy is increasing and prospects are broadening.

The organization evolves to adapt to these changes, reach varied profiles and respond to diverse life contexts. In a context of weakening public services and transforming the health system, VAFK continues to vigorously defend the rights of people living with cystic fibrosis, their loved ones and their families.

Its general regulations now include children and the immediate environment, showing a desire for wider inclusion.

At the age of 40, Living with cystic fibrosis looks to the future with lucidity, ambition and fidelity to its primary mission: accompany, support and unite people living with cystic fibrosis, throughout their journey.

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