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History
The Adult Cystic Fibrosis Committee of Quebec (ACFCQ)
was founded on October 17, 1985. At the time, there were about 200
adults (16 years and over) with cystic fibrosis in Quebec. Their life expectancy was then
23 years, but we had every reason to believe that it would improve,
which would increase the number of adults with CF. The transition
into adulthood has its share of difficulties for everyone, but it is even more
complex for persons who are physically challenged with
a severe organic impairment. This is where the idea of
getting together and creating a committee concerned with their quality of life emerged.
And it is with enthusiasm that six adults with CF (Mario Gagné, Lise
Tardif, Dora Dubé, Nancy Lefrançois, Marc Fortin and Serge
Benjamin) and Laval de Launière, then a guidance counsellor at St
Justine Hospital’s cystic fibrosis clinic, joined forces to create the ACFCQ.
Social workers from various cystic fibrosis clinics played
a crucial role in setting up the Committee. Actually, they introduced
the budding organization to their clients. Thanks to them, the ACFCQ
was able to draw up a list that included nearly every adult with cystic fibrosis in Quebec.
At the outset, the Canadian Cystic Fibrosis Foundation
(CCFF) and the Quebec Cystic Fibrosis Association (QCFA) ensured
the ACFCQ’s economic survival. Their financial contribution was greatly
appreciated, especially since the ACFCQ was pursuing different goals
and was trying to distance itself to better assert its purpose. It
should be noted that the CCFF and QCFA are organizations
for cystic fibrosis research.
Two determining factors marked the development of
the ACFCQ, allowing it to solidly establish and assert itself as a
self-governing and separate organization. The first factor was the creation
of a newsletter (Santé Vous Bien) (SVB link) for adults with CF in Quebec and the people in their lives. In time, this document became
the ACFCQ’s official magazine and an ideal means of fulfilling
the educational aspect of its social mission.
The purchase of the “629” (629 Headquarters link)
(a large house at 629 Prince Arthur St. West in Montreal) was the second
important factor for the ACFCQ. This house literally became the
organization’s home base. The many services provided at the “629”
allow the ACFCQ to fulfill the psychosocial aspect of its mission.
Over the years, the ACFCQ has reinforced its organization by
providing it with a solid democratic approach adding another dimension
to its social mission: defending the individual and collective rights of adults with CF in
Quebec. Today, the ACFCQ has 565 adult member
(18 years and over) with cystic fibrosis, which is about 90% of Quebec’s adult CF population.
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« 629 » Headquarters
The ”629” is a private institution located at 629 Prince-Arthur St.
West, in Montreal. The building houses the Adult Cystic
Fibrosis Committee of Quebec and the production centre for Santé Vous
Vous Bien (SVB) (SVB link).
Since its establishment, the ”629” has proved to be a valuable asset
for the ACFCQ. Many adults with CF have found help and psychological
support there.
The ”629” is really the heart of the organization. It is the
only place of its kind in the world, where people
can exchange ideas and help each other.
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SVB (Santé Vous Bien)
Santé
Vous Bien (SVB) is the official newsletter of the Adult Cystic Fibrosis
Committee of Quebec. It was first published in 1985.
Published once or twice a year, SVB is the ideal way of keeping in
touch with Quebec’s adult CF population and the people who are part
of their lives. Its function is not only to inform, but also to present the
actual experiences of adults with CF. Through its newsletter, the ACFCQ
tries to demystify this chronic disease and give CF readers the
tools for achieving independence. Finally, it presents role
models for adults with CF who are having difficulty asserting
their personal or professional identities.
SVB has been published in both official languages since 1996.
The ACFCQ has therefore been able to reach Quebec’s
Anglophone clientele and forge ties with adults with CF throughout the world.
It has a circulation of 3,000 copies (1,500 in French and 1,500 in English).
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