The Organization and its mission

The SOCIÉTÉ DE LA SCLÉROSE SYSTÉMIQUE (SCLÉRODERMIE) DU QUÉBEC INC., also called SCLERODERMA QUEBEC was founded in 1989 by Mr. Gilles Houlé and his wife, Suzanne Houlé. It was registered as a charity (no. 89808 9693 RR 0001) with the federal Government in 1992.

Scleroderma Quebec is governed by a Board of Directors composed of volunteers, the focal point around which revolve several committees, all dedicated to actively pursue the organization’s mission. Scleroderma Quebec has over 900 members and donors.

A multi-faceted mission

The ultimate objective: defeat the disease

Working on several fronts, the organization has made its mission to:

Help scleroderma patients by providing medical or moral support;
Raise funds for scleroderma research;
Develop information tools for the general public and stakeholders in the medical community.

Scleroderma Quebec provides support to patients

Present throughout Quebec, our self-help and support groups help break the sense of isolation many scleroderma patients experience. Either by email, by phone or during activities/meetings, it is possible for those affected by the disease to share issues and concerns with others. In addition, the main objectives of our Health Promotion Agent are to promote healthy living, answer questions, as well as provide useful information that enable people with scleroderma to better cope with their illness and improve their daily quality of life.

Here are a few of the many activities carried out by our Health Promotion Agent
and support groups:

Responding to inquiries from scleroderma patients pertaining to their health condition;
Developing and maintaining strong links with health professionals;
Collaborating to research;
Developing and creating communication tools about the disease;
Recruiting volunteers;
Organizing meetings and finding expert speakers;
Preparing and searching for relevant and useful articles about scleroderma with links to additional resources.

We all have concerns and questions about scleroderma, whether we are a scleroderma patient, a relative or a healthcare professional.

What are the early warning signs of scleroderma?
How can we enhance the quality of life of scleroderma patients?
What are the different challenges facing scleroderma patients and their families?

These are but a few of the issues that Scleroderma Quebec is addressing through its support groups and health promotion agent.

Scleroderma Quebec funds leading-edge research

Firmly convinced that hope lies in research, Scleroderma Quebec funds research projects aimed at finding the cause, better treatments, and a cure for scleroderma. Thanks to our first fundraising campaign, Scleroderma Quebec has established the only Scleroderma Research Chair in Canada and contributed nearly $2 million to research.

In collaboration with the Université de Montréal and the CHUM, Scleroderma Quebec has established the Scleroderma Research Chair, whose current holder is Dr. Senécal. The specific objective of the Chair is to conduct research aimed at improving the quality of life and life expectancy of scleroderma patients and, ultimately, defeating the disease.

It is worth stressing that this Scleroderma Research Chair, the only one of its kind in Canada, relies almost entirely on the financial support of our organization.

Scleroderma Quebec informs and raises awareness

One of the organization central mandates is to gather as much data as possible about the disease in order to provide relevant, accurate and timely information to scleroderma patients and health professionals. The more we know about the disease, the more we may allay the fears of those affected and help specialists gain a greater understanding of the pathology of scleroderma.

The magazine The Bulletin

A reference document, with a circulation of nearly 6,000 copies, Le Bulletin is a print magazine (available in French, with some articles in English) published twice a year, in the spring and fall. It is directed towards people with scleroderma, the general public and health professionals.

More than 4,500 doctors and health professionals receive our publication. Considering that scleroderma is an orphan disease, the number of specialists who receive Le Bulletin is of great importance to our organization, thereby demonstrating that this tool is used to assess and monitor the initiatives undertaken by Scleroderma Quebec while keeping the disease in the forefront of people’s hearts and minds.

Scleroderma Quebec is working together with the Quebec community to advance its mission and achieve its objectives. Individuals and businesses from all backgrounds can help our charity by making a donation or by participating in our fundraising events. It is thanks to the support, motivation and generosity of all the volunteers, donors, partners and researchers that Scleroderma Quebec is able to contribute as much to research and provide services to scleroderma patients.

History of the Organization

SCLERODERMA QUEBEC
30 years of enthusiasm and dedication
towards making the world a better place!

Owing its existence to sheer determination

Suzanne Houlé, a scleroderma patient, has fought the disease with remarkable courage and dignity. This active and dynamic woman has always lived life to the fullest and never allowed herself to be brought down by scleroderma. The enormous amount of energy that she has devoted to fighting this terrible disease has evolved into a strong commitment to encourage and help others, and advance the cause of scleroderma. With the tireless support of her husband Gilles Houlé, she was able to motivate other scleroderma patients to get involved and form a Board of directors, thus giving birth in 1989 to Scleroderma Quebec.

Since its inception,
the organization has come a long way.
Here are some highlights:

1989
Creation of Scleroderma Quebec by Gilles Houlé and his wife, Suzanne Houlé.

1992
Scleroderma Quebec becomes a registered charity (no. 89808 9693 RR0001) with the federal Government.

1996
Publication of Scleroderma Quebec’s first newsletter, created by Christiane Dubreuil and Robert Gravel.

1998
Appointment of Yvon Léveillé as chairman of the Board of directors.

1999
Establishment of a listening and assistance service to support scleroderma patients and their families in several regions of Quebec.

2000
Creation by Robert Gravel of the organization’s first Website.

2002
Robert Gravel is appointed part-time executive director.

2005
Establishment of the Scleroderma Research Chair at the Faculty of Medicine of the Université de Montréal, the first Scleroderma Chair in Canada. Its first holder is Dr. Jean-Luc Senécal, a world renowned rheumatologist and researcher.

Appointment of Diane Collard as the organization’s first full-time executive director.

Publication of a special insert on Scleroderma in La Presse and Le Soleil newspapers, and several other Gesca Ltd. regional publications (released: September 17, 2005).

Production of the first television advertising as part of the awareness campaign “Emergency” created and carried out pro bono by the agency Sid Lee. It aired free of charge over the television networks.

The organization acquires a short and simple domain name for its Website : www.sclerodermie.ca.

Launching of the fundraising campaign “Emergency”.

2006
Publication of a special insert on Scleroderma in the Saturday edition of the Journal de Montréal and the Journal de Quebec, on October 28, 2006.

Appointment of Normand Ricard as chairman of the Board of directors.

Esther Begin becomes Scleroderma Quebec’s spokesperson.

Television campaign during the month of June, Scleroderma Awareness Month, broadcast free of charge by TVA and TQS networks.

Since 2006, 160 Quebec municipalities have signed a resolution proclaiming in their respective city « June, Scleroderma Awareness Month ».

2007
Death of our co-founder, Ms. Suzanne Houlé (11 July 2007).

Appointment of Josée Fontaine as volunteer editor of the organization’s newsletter.

2008
Hiring of two community health outreach workers: Marielle Pelletier and Carmen Ricard, registered nurses.

2011
First Scleroderma Conference held in Quebec City, organized in collaboration with Scleroderma Quebec and the Scleroderma Society of Canada, bringing together over 300 participants, patients and medical specialists.

15^th edition of the organization’s newsletter, published twice a year, and distributed to members and 5,000 doctors throughout Quebec.

2013
Renewal of the scleroderma patients’ support program services.

2014
25^th Anniversary of Scleroderma Quebec.

2015
Nomination of Gaetan Baril as President of the Board of Directors.

2016
Hiring of Valérie Maisonneuve, nurse, as Health Promotion Agent.

2017
Nomination of Marielle Pelletier as volunteer editor of the magazine Le Bulletin.

2018
Thanks to an exceptional donation of $400,000 to Sclérodermie Québec to subsidize the purchase, for the Chair of the Scleroderma Research Centre of MUHC, of the best version of the BD FACSymphony High Speed Analyser system. This cutting-edge high parameter flow cytometer enables the simultaneous measurement of up to 50 caracteristics of a single cell. At a cost of over 1M $, very few of these analysers are currently available in North America. The accquisition of this analyser was made possible by combining this major donation with a grant from the Canada Foundation for Innovation given to an MUHC researcher. It has been at the disposal of the Scleroderma Research Centre since October 2018.