{"id":26001,"date":"2023-01-12T05:17:10","date_gmt":"2023-01-12T04:17:10","guid":{"rendered":"https:\/\/sclerodermie.ca\/?page_id=26001"},"modified":"2025-04-16T11:05:08","modified_gmt":"2025-04-16T15:05:08","slug":"26001-2","status":"publish","type":"page","link":"https:\/\/sclerodermie.ca\/en\/about-us\/26001-2\/","title":{"rendered":"Organization history"},"content":{"rendered":"

SCLERODERMA QUEBEC\u00a0<\/strong><\/strong>
\n30 years of enthusiasm and dedication<\/strong><\/strong>
\ntowards making the world a better place!<\/strong><\/strong><\/p>\n

Owing its existence to sheer determination<\/strong><\/p>\n

Suzanne\u00a0Houl\u00e9, a scleroderma patient,\u00a0has 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\u00a0Houl\u00e9, 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.<\/p>\n

Since its inception,\u00a0<\/strong>
\nthe organization has come a long way.\u00a0<\/strong>\u00a0<\/strong>
\nHere are some highlights:<\/strong><\/strong><\/p>\n

1989<\/strong>
\nCreation of Scleroderma Quebec by Gilles\u00a0Houl\u00e9\u00a0and his wife, Suzanne\u00a0Houl\u00e9.<\/p>\n

1992<\/strong>
\nScleroderma Quebec becomes a registered charity (no. 89808 9693 RR0001) with the federal Government.<\/p>\n

1996<\/strong>
\nPublication of Scleroderma Quebec\u2019s first newsletter, created by Christiane Dubreuil and Robert Gravel.<\/p>\n

1998<\/strong>
\nAppointment of Yvon\u00a0L\u00e9veill\u00e9\u00a0as chairman of the Board of directors.<\/p>\n

1999<\/strong>
\nEstablishment of a listening and assistance service to support scleroderma patients and their families in several regions of Quebec.<\/p>\n

2000<\/strong>
\nCreation by Robert Gravel of the organization\u2019s first Website.<\/p>\n

2002<\/strong>
\nRobert Gravel is appointed part-time executive director.<\/p>\n

2005<\/strong>
\nEstablishment of the Scleroderma Research Chair at the Faculty of Medicine of the University de Montr\u00e9al, the first Scleroderma Chair in Canada. Its first holder is Dr. Jean-Luc Sen\u00e9cal, a world renowned rheumatologist and researcher.<\/p>\n

Appointment of Diane Collard as the organization\u2019s first full-time executive director.<\/p>\n

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).<\/p>\n

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.<\/p>\n

The organization acquires a short and simple domain name for its Website\u2009:\u00a0www.sclerodermie.ca.<\/p>\n

Launching of the fundraising campaign “Emergency”.<\/p>\n

2006<\/strong>\u00a0
\nPublication of a special insert on Scleroderma in the Saturday edition of the Journal de Montr\u00e9al and the Journal de Quebec, on October 28, 2006.<\/p>\n

Appointment of Normand Ricard as chairman of the Board of directors.<\/p>\n

Esther Begin becomes Scleroderma Quebec\u2019s spokesperson.<\/p>\n

Television campaign during the month of June, Scleroderma Awareness Month, broadcast free of charge by TVA and TQS networks.<\/p>\n

Since 2006, 160 Quebec municipalities have signed a resolution proclaiming in their respective city \u00ab June, Scleroderma Awareness Month\u2009\u00bb.<\/p>\n

2007
\n<\/strong>Death of our co-founder, Ms. Suzanne\u00a0Houl\u00e9 (11 July 2007).<\/p>\n

Appointment of Jos\u00e9e Fontaine as volunteer editor of the organization\u2019s newsletter.<\/p>\n

2008
\n<\/strong>Hiring of two community health outreach workers: Marielle Pelletier and Carmen Ricard, registered nurses.<\/p>\n

2011
\n<\/strong>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.<\/p>\n

15th<\/sup> edition of the organization\u2019s newsletter, published twice a year, and distributed to members and 5,000 doctors throughout Quebec.<\/p>\n

2013
\n<\/strong>Renewal of the scleroderma patients\u2019 support program services.<\/p>\n

2014
\n<\/strong>25th<\/sup> Anniversary of Scleroderma Quebec.<\/p>\n

2015<\/strong>
\n<\/strong>Nomination of Gaetan Baril as President of the Board of Directors.<\/p>\n

2016<\/strong>
\n<\/strong>Hiring of Val\u00e9rie Maisonneuve, nurse, as Health Promotion Agent.<\/p>\n

2017<\/strong>
\n<\/strong>Nomination of Marielle Pelletier as volunteer editor of the magazine Le Bulletin<\/em>.<\/p>\n

2018<\/strong>
\n<\/strong>Thanks to an exceptional donation of $400,000 to Scleroderma Quebec to subsidize the purchase, for the Chair of the Scleroderma Research Centre of MUHC, of the best version of the BD FACSymphony <\/em>High Speed Analyser system<\/em>. This cutting-edge high parameter flow cytometer enables the simultaneous measurement of up to 50 characteristics 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.<\/p>\n

2019<\/b>
\nFirst 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.<\/span><\/p>\n

Development of a series of educational fact sheets on various scleroderma-related topics.<\/p>\n

Social media campaign on the theme <\/span>Demystifying Scleroderma<\/span><\/i>, which took place in June, Scleroderma Awareness Month.\u00a0<\/span><\/p>\n

2020<\/b>
\nScleroderma Quebec held the first series of four virtual patient forums featuring lectures by medical specialists and patient testimonials.<\/span><\/p>\n

Due to the pandemic, our annual benefit evenings in Montreal and Quebec City were replaced by an online fundraising campaign in 2020-2021.<\/span>\u00a0<\/span><\/p>\n

2021<\/b>
\nPublication of a Medications Guide for Scleroderma. Collaborators: Dr. Jean-Luc Sen\u00e9cal, MD, FRCPC, MCRA Dr. Sabrina Hoa, MD, MSc, FRCPC and Ai-Minh Van, pharmacist, BeCP.<\/span><\/p>\n

Development of the Challenges for Scleroderma<\/i> online platform, which allows supporters to create and run their own fundraiser for Scleroderma Quebec.<\/p>\n

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 Rhapsody<\/span>TM<\/span> 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 FACSymphony<\/span>TM<\/span> with which it works in tandem, the BD Rhapsody<\/span>TM<\/span> 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 FACSymphony<\/span>TM<\/span>).<\/span><\/p>\n

2022<\/b>
\nAppointment of Atty. Carole Gilbert and Mr. Normand Ricard as honorary members of Scleroderma Quebec.<\/span><\/p>\n

Appointment of Caroline C\u00f4t\u00e9 as an official spokesperson for Scleroderma Quebec.<\/span><\/p>\n

Publication of a guide for resource persons in the Scleroderma Quebec support network.<\/span><\/p>\n

First edition of the<\/span> Great Beer-Tasting Event <\/span><\/i>in Montreal to benefit Scleroderma Quebec and the Quebec Veterans Foundation.<\/span><\/p>\n

20<\/span>th<\/span> edition of the Friendly Golf Tournament organized by volunteers \u00c9ric Canuel, Luc T\u00e9treault and Richard Tremblay.<\/span><\/p>\n

23<\/span>rd<\/span> edition of Scleroderma Quebec\u2019s Benefit Evening in Montreal, marking our return to in-person activities. This event raised a record net profit of $502,572!<\/span><\/p>\n

A leader in funding cutting-edge scleroderma research, Scleroderma Quebec has already committed more than $3 million in research support.\u00a0<\/span><\/p>\n","protected":false},"excerpt":{"rendered":"

SCLERODERMA QUEBEC\u00a0 30 years of enthusiasm and dedication towards making the world a better place! Owing its existence to sheer determination Suzanne\u00a0Houl\u00e9, a scleroderma patient,\u00a0has 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. […]<\/p>\n","protected":false},"author":5,"featured_media":0,"parent":26150,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"page-a-propos-de-nous.php","meta":{"_acf_changed":false,"footnotes":""},"class_list":["post-26001","page","type-page","status-publish","hentry"],"acf":[],"_links":{"self":[{"href":"https:\/\/sclerodermie.ca\/en\/wp-json\/wp\/v2\/pages\/26001","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/sclerodermie.ca\/en\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/sclerodermie.ca\/en\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/sclerodermie.ca\/en\/wp-json\/wp\/v2\/users\/5"}],"replies":[{"embeddable":true,"href":"https:\/\/sclerodermie.ca\/en\/wp-json\/wp\/v2\/comments?post=26001"}],"version-history":[{"count":13,"href":"https:\/\/sclerodermie.ca\/en\/wp-json\/wp\/v2\/pages\/26001\/revisions"}],"predecessor-version":[{"id":29146,"href":"https:\/\/sclerodermie.ca\/en\/wp-json\/wp\/v2\/pages\/26001\/revisions\/29146"}],"up":[{"embeddable":true,"href":"https:\/\/sclerodermie.ca\/en\/wp-json\/wp\/v2\/pages\/26150"}],"wp:attachment":[{"href":"https:\/\/sclerodermie.ca\/en\/wp-json\/wp\/v2\/media?parent=26001"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}