Mission
Improve the well-being of people affected by familial ataxia, contribute to research in promising treatments and bring together the community of interest in Canada.
Vision
A world where people diagnosed with ataxia can aspire to a fulfilling life thanks to advances in research, support, and inclusion within the Canadian community.
Values
- Respect
- Empathy
- Dedication
- Determination
- Integrity
Objectives
- To advance research on familial ataxias in order to fight their causes and their effects.
- To provide an association for people suffering from familial ataxias and those working with the disease, either as immediate caregivers or as health professionals and researchers.
- To make health professionals, political decision-makers and the population in general aware of the disease and of its impact on the physical and psychological health of the victims as well as on the professional and financial aspects of their lives.
- To inform the members and the partners in activities relating to familial ataxias (research, publications, activities, etc.) by editing a magazine.
- To generate funds by means of fundraising campaigns, activities, voluntary subscriptions, requests for grants, shares and legacies, in order to realize the goals of the Association.
Origin
Dr Barbeau & Claude St-Jean
In 1972, Claude St-Jean, following an evaluation of his symptoms by Dr. Barbeau (a prominent person in the neurological field), was condemned to death. He did not accept it and in response to this diagnosis decided to found a scientific committee in order to begin medical research on the disease named “Friedreich’s ataxia” (as described in books by Dr. Nicolas Friedreich in 1882). During this era, doctors knew almost nothing about the disease and their interest in research was nonexistent. The same year, Claude founded the Canadian Association for Friedreich Ataxia. The holding of fundraisers was necessary to assure the financing of eventual medical research as well as to support a potential group of people presenting the same symptoms.
In 2003, the organization changed its name following the discovery of numerous other types of hereditary ataxia. It was then decided to bring together everyone afflicted with a hereditary ataxia (with an identified form or not) and to extend medical research to them.
Activity report 2025, 2025 Financial statements ( French only ) , Budget, financial results ( English 1 pager)
Activity report 2024, 2024 Financial statements ( French only )
Activity report 2023 2023 Financial statements ( French only audit)
Download previous year’s documentations
Activity report 2022 2022 Financial statements ( French only audit)
Activity report 2021 2021 Financial statements ( French only audit)
Activity report 2020 2020 Financial statements ( French only audit)
Activity report 2019 2019 Financial statements ( French only audit)
Board of directors
Trinidad Ruiz
Trinidad Ruiz is a marketing professional who graduated from the University of Ottawa in 2011 with a bachelor’s degree in International Management. Her professional background includes supply chain management and product marketing in various industries ranging from retail to government to electronic components. Trinidad has been a devoted volunteer throughout...
Nathalie Farley, erg. M.Sc.
Graduated in occupational therapy (1994) from UMcGill, holds a master’s degree in Master’s degree in Biomedical Sciences, rehabilitation option Université de Montréal (2006), clinical assistant professor at the UdM from 2011 to 2020, Nathalie has been a manager in the healthcare for nearly twelve years. Continuing education teacher clinician and...
André De Montigny
André De Montigny has been active as Vice-President, Business Development and member of the senior management teams of Via Rail, Téléglobe Canada, Vidéotron, CDPQ and Transat. He has realized numerous acquisitions and divestitures in Canada but mostly in Europe, Asia and Latin America. Moreover, he has been responsible for Transat’s strategic...
Nicolas Parent
Nicolas brings a unique combination of technical expertise and personal experience as a member of the board of directors of Ataxia Canada. With over 15 years of experience in financial and operational management of SMEs, he holds a graduate degree in accounting from UQTR and is a CPA. As an...
Nicolas Théberge
Nicolas Theberge is a John Molson School of Business alumni with 15 years of sales and marketing experience. Currently living in Calgary with his wife Bri and 2 kids Sebastien and Vincent, Nicolas is the Territory Manager for ResMed, a medical technology company focused on sleep and ventilation products.
Maryse Tremblay
Maryse Tremblay is a board member of Ataxia Canada, a renowned rare disease foundation dedicated to supporting individuals affected by hereditary ataxia. With a wealth of experience in ethics and compliance, Maryse brings a unique perspective and valuable expertise to the organization. Currently serving as the Vice President of Ethics...
Martine Trudelle
Graduated from McGill University with a degree in occupational therapy (1994) and holds a professional master’s degree with thesis option from Dalhousie University (2016). I have practiced for over 28 years as a clinician in both community and hospital settings in Ontario. Since the summer of 2022, I have been...
Jean Luk Pellerin
As the previous President of Ataxia Canada, Jean-Luk brings a unique blend of professional expertise and personal dedication to the cause of Ataxia awareness and support. Drawing from intimate family experience and extensive collaboration with partners and stakeholders, Jean-Luk possesses a profound understanding of the challenges faced by those affected...
Office Team
François-Olivier Théberge
Graduate in Mechanical Engineering from École Polytechnique de Montréal. François-Olivier has a varied professional background: engineering project manager, multidisciplinary team coaching, department director and entrepreneur. He is responsible for bridging the gap between scientists, researchers and other organizations working on ataxias.
Olga Karmanova
Graduated from McGill University and with a career of more than fifteen years in marketing for renowned brands and a few years in consulting, Olga found her passion in philanthropic work. She brought all her expertise to non-profit organizations to foster a culture of philanthropy and increase their financial autonomy. Having lost...
Mackenzie Myatt
Mackenzie brings a creative and diverse skillset to Ataxia Canada, with a unique background in music, design, and education. Her experience in customer service, administration, and account management, as well as a long-standing commitment to volunteer work supporting individuals with disabilities, are what make her a valued team member to...
Partners and financial supporters
NAME
in January 2014 the Canadian Association for Familial Ataxias (CAFA) – Claude St-Jean Foundation became Ataxia Canada – Claude St-Jean Foundation. We will continue to use both names for a period while the new name gradually replaces the old one. It is strongly suggested to use the name Ataxia Canada as follows:
- Ataxia Canada – Claude St-Jean Foundation
- Ataxia Canada
- Claude St-Jean Foundation
LOGOS
Official Logo
