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 federally registered charity established in 2006. 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

Our journey began as concerned parents driven by the belief that every child deserves hope and a future free from this rare disease ARSACS.  We are committed tiressely pursuing research and breakthroughs fuelled by the hope of finding a treatment that will improve the lives of not only our children by all those affected by this condition”.

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.

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.

Dr. Luc Desnoyers

Dr. Luc Desnoyers

Vice- President at Neuron23

Dr. Luc Desnoyers serves as the Vice-President of Translational Research and Discovery at Neuron23. He is leading the biomarker and diagnostics efforts to move programs from the late-stage research to clinical proof of concept.

Dr. Desnoyers has spent more than two decades in the biopharmaceutical industry. Prior to joining Neuron23, Dr. Desnoyers held different positions at  CytomX Therapeutics and  Genentech. Dr. Desnoyers holds a Ph.D. in Biochemistry from University of Montreal and completed his post-doctoral fellow at UT Southwestern Medical Center with Drs Brown and Goldstein. He is an inventor on 1669 patents and an author on 21 top-tier publications.

Carl Deslongchamps

Carl Deslongchamps

Canadian Tax Foundation

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

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. 

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).

Carole Gailloux

Carole Gailloux

Founder and President of Groupe Assura

A lawyer by training, Mrs. Gailloux is also an actuary and a certified financial planner. She holds a degree in actuarial science from Laval University, a bachelor’s degree in law  and  a graduate diploma in taxation from the University of Montreal. A member of the Quebec Bar and the IQPF (The Quebec Institute of Financial Planning).

 An entrepreneur at heart and with an impressive professional track record, she found the Assura Group. Prior, she held different positions within renowned companies such as Mercer Canada, RBC, Merrill Lynch, CIBC, and Manulife.

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. Since October 2023, he is the President  of Catalis Quebec’s  board of directors. Catalis’ mandate is, among other things, to facilitate collaboration between the various actors and to accelerate the development of innovative treatments.
Robert Guy

Robert Guy

Managing Director, Corporate Banking, Quebec Caisse Desjardins

Robert Guy, a graduate from Concordia University, held over the years different positions at  some financial institutions. He is currently Managing Director  at Caisse Desjardins.
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. Massimo Pandolfo

Dr. Massimo Pandolfo

Professor of Neurology at McGill University in Montreal

Dr. Massimo Pandolfo is Professor of Neurology at McGill University in Montreal, Canada since January 2021. Between 2001 and 2020 he has been Professor of neurology and Director of the Laboratory of Experimental Neurology at the Université Libre de Bruxelles in Belgium.

Dr. Pandolfo has led the team that identified the Friedreich ataxia (FRDA) gene in 1996 and has since been at the forefront of basic, translational and clinical research on FRDA and other ataxias.

In addition to his work on ataxias, Dr. Pandolfo has contributed to the clinical and genetic study of several rare inherited neurological diseases.

Dr. Pandolfo current research focuses on dissecting the pathogenesis of inherited ataxias and on the development of small molecule and gene therapy-based approaches.

Dr. Pandolfo obtained his medical degree from the University of Milan, Italy.

 

Dr. Marc Rivière

Dr. Marc Rivière

General Partner & Chief Medical Officer at TVM Life Science Management in Montreal

An experienced executive with a track record in successfully building and managing clinical programs, Dr. Marc Rivière ’s expertise encompasses all aspects of drug development in different clinical indications from pre-clinical development to post marketing surveillance. At TVM Capital Life Science, he focuses on evaluation of deal opportunities and investment management for therapeutics. He also works closely with the firm’s strategic partner Eli Lilly & Co. and its drug development division Chorus.

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. In 2004, he joined the University of Montreal where he created the Center of Excellence in Neuromics and took charge of the CHU Sainte-Justine Research Center. In 2013, he returned to McGill University to serve as 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.