“During a benefit show, I had the pleasure of meeting the families and children affected by Leukodystrophy. I saw the hard work and all of the efforts made by volunteers to raise money to fund research in order to find a cure for this deadly disease. In my career, I have met many people, but this show was magical. I saw how everyone poured their hearts into it so I decided to pour mine into it as well! That is why I support the Foundation!” – Luc Langevin, the Foundation’s Spokesperson.
Loved by both young and general audiences, illusionist Luc Langevin joined the Foundation’s team in 2012. His interest in science, his gentle kindness and his involvement in the organization make him a magical, engaged spokesperson.
Marjolaine Verville and Éric Tailleur, the parents of a young boy named Alexis who had 4H syndrome, a type of Leukodystrophy, created the Leukodystrophy Foundation in 2006. Leukodystrophy is an incurable degenerative disease that affects nearly 1 of every 7600 children.
The Foundation’s objectives are to support research to identify the causes as well as to develop treatments to control and cure the disease all the while providing hope and support to the affected children and their families. Funds raised currently finance promising research projects lead by many research teams.
Cerebral Leukodystrophy is a genetically transmitted degenerative disease of the nervous tissue. Many children die very young. At best, they may live until early adulthood.
To give children diagnosed with Leukodystrophy the best chance of a cure by financing research, supporting the development of projects dedicated to treating this disease, and by providing psychosocial support to their families.
To discover a treatment for children with Leukodystrophy by 2022 and provide psychosocial support to all families affected by rare or degenerative diseases.
Our Board of Directors
The Leukodystrophy Fondation is pleased to have the support of a rich and diversified Board of Directors. Business people, philanthropic management professionals, researchers, and parents of affected children support the cause every day.
Cofounder, Board Chair, and mother of a boy who had the disease
Cofounder and father of a boy who had the disease
Father of two daughters who died from the disease
Early Childhood Educator
President and CEO, RytvelBiotech
Professor and Pierre C. Fournier Research Chair in Functional Genomics, Université de Sherbrooke
President of Hodran and the Genome Quebec Board of Directors
Philanthropic Development Advisor, Université Laval Foundation
Board Secretary and President of the Jean-Paul Tardif Foundation
Mother of two boys who had the disease, one of whom died from it