About Us

Our Mission 

 

The Ataxia Charlevoix-Saguenay Foundation’s mission is to discover and develop a treatment for the Autosomal Recessive Spastic Ataxia of Charlevoix-Saguenay (ARSACS)

The Ataxia Charlevoix-Saguenay Foundation is a charitable  organization established in 2006 and federally registered. The Foundation has no employees and is supported entirely by private donations and volunteers to fund scientific research on ARSACS. From the donations and other fundraising activities,  98% goes directly to fund research projects.

What We Do

RAISE FUNDS

The Ataxia Charlevoix-Saguenay Foundation is a charitable organization supported entirely by private donations. Different events are organized during the year by families, friends and community groups to raise funds to support research on ARSACS.

SPEND ON RESEARCH

The main research objective of the Ataxia Charlevoix-Saguenay Foundation is to develop a treatment for ARSACS. Several research projects on ARSACS are currently funded by the Foundation in Canada and abroad. Over 98% of the funds raised are allocated to research.

PRECLINICAL AND CLINICAL TRIALS

The Foundation is ready to conduct preclinical and clinical trials. It has the expertise and the tools available. Furthermore, the existing ARSACS International Patient Registry is a good source of potential patients interested in participating in such trials.

 

ASSEMBLE A GREAT TEAM

Since its creation, the Foundation has been successful in assembling a great team at all levels of the organization (board, advisors, researchers, contributors and partners). The researchers are well respected in their field and have an international reputation for excellence.

DISCOVER

The main research objective of the Ataxia Charlevoix-Saguenay Foundation is to develop a treatment for ARSACS.

OUR TEAM

Founders

The Ataxia Charlevoix-Saguenay Foundation was founded in 2006

by Jean Groleau and Sonia Gobeil

Jean Groleau

Jean Groleau

Jean Groleau is a tax lawyer and partner at Groleau Gauthier Plante law firm in Montreal. He is the co-founder and president of the Ataxia of Charlevoix-Saguenay Foundation.

Sonia Gobeil

Sonia Gobeil

Sonia Gobeil  holds a degree in law from the University of Ottawa and a masters degree in taxation from the University of Sherbrooke. She is a member of the Barreau du Quebec since 1990. Prior to joining KPMG, she worked at the Canadian Tax Foundation and as a tax consultant at KPMG and RSM Richter.

Board of Directors

Dr. Paolo Arrigoni

Dr. Paolo Arrigoni

Specialist in Orthopedics, University of Milan, Italy

Graduated in Medicine and Surgery – University of Milan-Bicocca State University. Specialist in Orthopedics and Traumatology, University of Milan. Current Position :  Executive  at the Gaetano Pini Orthopedic Institute.

Marc Barbeau

Marc Barbeau

President Ovivo

Marc Barbeau is a CPA and holds a master in taxatioin. He is the President /CEO at Ovivo. Prior to joining Ovivo, he held various positions at Raymond Chabon Grant Thornton and at Laperrière & Verreault inc.

Michel A. Brunet

Michel A. Brunet

Chair and Chief Executive Officer at Dentons

Michel A. Brunet has over 30 years of experience in acquiring , selling and finacing businesses.

Carl Deslongchamps

Carl Deslongchamps

Retired

Carl Deslongchamps, D.E.S.S. Fisc., has a Bachelor of Commerce degree, with a Finance option, and a Diploma in Taxation. He held different positions over the years at Canada Revenue Agency and KPMG.

Julie Duschesne

Julie Duschesne

Business Leader at Mercer

Julie Duchesne, actuary, FSA, FCIA, Partner, has over 20 years of experience in the field of benefits consulting and team leadership. She is currently Health Business leader for Canada in group insurance practice at Mercer. She has also served on the board of CIFAR (Canadian Pension and Benefits Institute).

Dr. Nicolas Dupré

Dr. Nicolas Dupré

Centre Hospitalier Affilié Universitaire de Québec

Dr. Dupré is a clinical and research neurologist who specialises in neuromuscular and neurogenetic diseases. His practice is at the Centre hospitalier affilié universitaire de Québec. He is also an Associate Professor in the Faculty of Medicine at Laval University. Dr. Dupré endeavours to discover the genes that determine a predisposition to neurodegenerative diseases in the population of Quebec, such as hereditary ataxias. 

Dr. Martin Godbout

Dr. Martin Godbout

President at Hodran Inc.

Dr. Martin Godbout holds a B.Sc. in biochemistry and a Ph.D. in physiology and molecular endocrinology from Laval University. From 1985 to 1990, he received a postdoctoral fellowship from the Medical Research Council (MRC) of Canada and was trained in Neuromolecular Biology at the Scripps Research Institute in California. For several years , Dr. Godbout was at Genome Canada. He is currently president at Hodran inc.

Jean Groleau

Jean Groleau

Partner at Groleau Gauthier Plante

Jean Groleau is a fiscal lawyer and partner at Groleau Gauthier Plante law firm. He is the co-founder and president of the Ataxia of Charlevoix-Saguenay Foundation.
Robert Guy

Robert Guy

Senior Vice-President at Wells Fargo

Robert Guy, a graduate from Concordia University, held different positions at Royal Bank and National Bank and at GE Capital Canada. Mr Guy is currently senior Vice President at Wells Fargo in Montreal.
Jacques Marchand

Jacques Marchand

President at Briva Finances

Jacques Marchand has a bachelor degree from l’École des Hautes Études Commerciales and a MBA from the Université du Québec in Montréal. He is the founder and president of Briva Finance.

Dr. Jacques Michaud

Dr. Jacques Michaud

Centre de recherche du CHU Ste Justine

Dr.Jacques Michaud completed his training in pediatrics and medical genetics at the University of Montreal and the University of Toronto. He then continued a genetic research training at the College de France in Paris, then at the Carnegie Institution of Washington / Johns Hopkins University in Baltimore. On his return in 1999, he chose to pursue a clinician scientist career. Clinical and research activities of Dr. Michaud is focused on the genetics of the neuro-development disorders.

Dr. Guy A. Rouleau

Dr. Guy A. Rouleau

Director of the Montreal Neurological Institute-Hospital ( NEURO)

Dr. Guy Rouleau is Director of The Neuro (Montreal Neurological Institute-Hospital), Chair of the Department of Neurology and Neurosurgery of McGill University.

He graduated with a medical degree from the University of Ottawa in 1980 and conducted his clinical training in Neurology at McGill University from 1980‐1985. He went on to pursue a PhD in Genetics at Harvard University. He returned to Montreal in 1989 to establish his research and clinical career at McGill University. In 2004 he moved to the University of Montreal where he created the Centre for Excellence in Neuromics and became Director of the Research Centre of the CHU Sainte-Justine. In 2013 he returned to McGill to take up the position of Director of The Neuro.

 

Betsy Trainor

Betsy Trainor

Corporate Attorney at Fibertek

Betsy Trainor is a corporate attorney at Fibertek, a high-tech company in the U.S. She has a vast experience in different fields. She is an author who has published several children’ books. 

Researchers

 

The Ataxia Charlevoix-Saguenay Foundation research team is composed of many researchers around the world. The researchers are well respected in their field and have an international reputation for their expertise.

Every year, the Foundation finances several ARSACS research projects.