To bring people living with an ataxia together, as well as the community of interest, in order to promote and protect the ataxic persons, improve their well-being and ultimately eradicate their disease.


  • 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.


Claude St-Jean & Dr Barbeau

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 2019    Financial statements ( French only audit)

Board of directors

Sebastien Huynh

Masters Degree in Environment of Bordeaux I University (France), MBA ESG Paris e (France) and graduate of HEC Montréal, title of CPA-CMA. Financial executive with more than 15 years of international experience in Financial Analysis, Corporate Finance and Strategic Planning. Socially involved in several NGOs and interested in international exchanges.

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...

Marc Dansereau

Always looking for new challenges, Marc  Dansereau has been investing in equity capital, while actively involved in the day-to-day management of small and medium-sized businesses in search of succession and growth. During his 30-year career, he has built dynamic teams to meet the challenge of growing SMEs in which he...

Diane Roch

Over the past 15 years, Ms. Roch has worked for not for profit foundations and developed a solid expertise in philanthropy, management of foundations and fundraising. Prior to her career in philanthropy, Diane held senior management positions in marketing and communications at the Ritz Carlton Hotel, at Palais des Congrès...

Josée Goulet

Josée Goulet graduated from École Polytechnique in electrical engineering in 1985 and completed her MBA in 1990 at McGill University. She joined Bell Canada in 1985 to hold various engineering, sales, marketing, customer service and business unit management positions. Ms. Goulet held the Canadian presidency of the Juvenile Diabetes Research...

Sandy Sadler

Sandy Sadler is a healthcare professional and an experienced manager who has worked in several public and Para public sectors in Quebec as well as internationally. Having worked for many years as a physiotherapist, she has always been passionate about improving the quality of life for people with chronic physical...

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...

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.

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.

Francine Lévesque

Francine has been working for more than 40 years as an administrative assistant. She worked for several companies, including a non-profit organization. Mother of a young ataxic, she is well aware of the vagaries of this disease and she has a very great motivation for the advancement of research.

Advisory committee

Susan Harding

Susan Harding lives in Ottawa and was diagnosed with an unknown SCA in 1992. Her mother and some of her siblings have had it too. In 2017, through a worldwide study called Care4Rare, she was diagnosed with SCA42. She tries to lead an active and healthy lifestyle to slow the...

Sakina Rehmanji

Sakina Rehmanji lives in the GTA in Ontario Canada. She has two teenage boys and one of them has Friedreich’s Ataxia (FA). She brings to the council her almost 10 years of experience dealing and coping with FA. Her son was diagnosed in 2009 and has participated in clinical trial...

Brittany Sommerfield

Brittany Sommerfield live in Winnipeg, Manitoba and has Friedreich’s ataxia. Since her diagnosis in 2007, Brittany has taken part in three clinical trials with her sister. She attended multiple NAF conferences ,FARA symposiums , Philly rideATAXIA events and one CAFA symposium in London Ontario in 2013. Other than her volunteer...

Loiq Fortin

Loiq Fortin is a very enthusiastic young man who likes to work in a team. He’s been jovial since I was young and loves helping people. With ataxia, he tries to show people that there are many ways to look at things

Jessica Laneuville

Jessica has Friedreich’s ataxia. She is first and foremost, the mother of Kélyane 10 years who is in perfect health! She is positive and has been involved in the foundation for 10 years already! His goal on the advisory board is to improve the quality of life of ataxics! She...

André Allard

André Allard is a librarian with a master’s degree in public administration. He was chief librarian at Hôpital Notre-Dame and oversaw documentary services at the University Hospital of Montreal until November 2011. Since then, he has been self-employed and semi-retired. André has a member of his family with ataxia. He...

Brenda Dixon

Brenda was born in Montreal and moved to Vancouver, BC in 1968. She has Friedreich’s Ataxia. Brenda knew of Claude St. Jean Foundation in her last years in Montreal, and she had the pleasure of meeting Claude when he visited Vancouver in the 70’s.

Special collaborators and volunteer

Viveka Parameswaran

Viveka is the current President and Principal of her own consulting firm H.E.R Canada Consultancy – specializing in strategy and program/project management consulting to clients in Health, Resources and Energy sectors. She is a mechatronics engineer by training, has a masters degree in manufacturing management, and an experienced PMP certified project manager with 15 years of industry experience. Viveka brings a wide breadth of hands-on experience in developing business strategy, and managing complex projects that include multi- million-dollar green energy projects in Canada for companies such as...


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



Official Logo


 Old logo

Please note that the old logo is still used on some printed material for a period while the new logo gradually replaces the old one.







Rules and regulations

Rules and regulations