Organization history

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.

15th 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
25th 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.

2019
First edition of an awareness day at the National Assembly of Quebec to help raise awareness among members of parliament about scleroderma and its serious health consequences for patients.

Development of a series of educational fact sheets on various scleroderma-related topics.

Social media campaign on the theme Demystifying Scleroderma, which took place in June, Scleroderma Awareness Month. 

2020
Scleroderma Quebec held the first series of four virtual patient forums featuring lectures by medical specialists and patient testimonials.

Due to the pandemic, our annual benefit evenings in Montreal and Quebec City were replaced by an online fundraising campaign in 2020-2021. 

2021
Publication of a Medications Guide for Scleroderma. Collaborators: Dr. Jean-Luc Senécal, MD, FRCPC, MCRA Dr. Sabrina Hoa, MD, MSc, FRCPC and Ai-Minh Van, pharmacist, BeCP.

Development of the Challenges for Scleroderma online platform, which allows supporters to create and run their own fundraiser for Scleroderma Quebec.

Scleroderma Quebec launched a fundraising campaign. Thanks to the support of all the provincial scleroderma associations and an exceptional donation from a member of Scleroderma Quebec, a state-of-the-art instrument has been installed at the Scleroderma Research Chair. The BD RhapsodyTM is a single-cell analysis system that analyze the expression of hundreds of genes across tens of thousands of single cells in parallel. Like the FACSymphonyTM with which it works in tandem, the BD RhapsodyTM requires access to valuable biological samples from patients. This instrument allows the analysis of the complete transcriptomic signature (all genes) of each cell identified by certain specific phenotypic criteria (determined with the FACSymphonyTM).

2022
Appointment of Atty. Carole Gilbert and Mr. Normand Ricard as honorary members of Scleroderma Quebec.

Appointment of Caroline Côté as an official spokesperson for Scleroderma Quebec.

Publication of a guide for resource persons in the Scleroderma Quebec support network.

First edition of the Great Beer-Tasting Event in Montreal to benefit Scleroderma Quebec and the Quebec Veterans Foundation.

20th edition of the Friendly Golf Tournament organized by volunteers Éric Canuel, Luc Tétreault and Richard Tremblay.

23rd edition of Scleroderma Quebec’s Benefit Evening in Montreal, marking our return to in-person activities. This event raised a record net profit of $502,572!

A leader in funding cutting-edge scleroderma research, Scleroderma Quebec has already committed more than $3 million in research support. 

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