Hope for life!

 
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Logo The Canadian Foundation - Leukodystrophy

The ChildrenThe ChildrenGet to know our children 
The FoundationStarted by Alexis Verville-Trailleur’s parents, who suffers from 4H Syndrome, a form of leukodystrophy, the Leukodystrophy Foundation’s objectives are to promote new treatment options in order to provide hope to children suffering from this severe degenerative disease as well as offer psychosocial help to affected families.
Luc Langevin Our spokespersonLuc Langevin Our spokesperson
ResearchResearchProjects to support hope!
Family SupportFamily SupportFind resources and services
I Support the Cause!I Support the Cause!Donate
LeukodystrophiesLeukodystrophiesFind out more about the different kinds of leukodystrophy
Organize a FundraiserStay informed of the Foundation’s activities
FundraisingParticipe in the fundraising campaign for leukodystrophy

“We know that medical research requires significant resources. It takes a lot of means to begin a research protocol, conduct pre-clinical trials, and to find cures. But it’s only at a price that we will be able to save the lives of children with Leukodystrophy.” - Luc Langevin, the Foundation’s spokesperson.

Loved by both the 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 and engaged spokesperson.

 

Research

The Foundation benefits from the expertise of many researchers who are interested in Leukodystrophies. Today, three suspect genes have been identified and the work continues with a larger team, which now includes seven exceptional researchers. Important partnerships have also been formed in Ottawa, Ontario, and a Leukodystrophy research program was developed with the support of Génome Québec, which agreed to share its scientific network to help the Leukodystrophy Foundation.

 

Our Research Over the Years

  • 2006 : Foundation created by Éric Tailleur and Marjolaine Verville
  • 2008 : Funding for the first clinical and genetic research on Quebec children with Leukodystrophy. Dr. Bernard Brais’ laboratory researches the new genes responsible for unknown types of the disease.
  • 2010 : Description of a new type of Leukodystrophy in Quebec patients.
  • 2010 : Dr. Genevieve Bernard creates the first specialized Leukodystrophy Clinic for children at The Montreal Children’s Hospital.
  • 2011 : Drs. Bernard Brais, Roberta La Piana and Donatella Tampieri create the first specialized clinic and the interdisciplinary group on Adult Leukodystrophies at the Montreal Neurological Institute
  • 2011 : Dr. Bernard Brais and Dr. Geneviève Bernard’s teams discover the POLR3A and POLR3B genes responsible for new type of Leukodystrophy
  • 2014 : Publication of the largest international collaborative study on Leukodystrophy linked to POLR3, also called 4H syndrome, under the direction of Dr. Geneviève Bernard and Dr. Nicole Wolf from Amsterdam.
  • 2015 : Publication of a third gene, POLR1C, which causes Leukodystrophy linked to POLR3 or 4H by Dr. Benoît Coulombe, Dr. Jacques Archambault and Dr. Geneviève Bernard’s the teams
  • 2016 :
    • 7 researchers with grants
    • 2 new research projects
    • New mice for laboratory testing
    • CRISPR Gene Therapy
    • Corrected assembly
    • Promising substances

Our Researchers

Dr Benoît Coulombe

Dr. Benoît Coulombe

IRCM Research Professor and Director of the Research Unit in Translational Proteomics

Benoît Chabot

Dr. Alex Mackenzie

Paediatrics Professor

Faculty of Medicine, Researcher, Research Institute of the Children’s Hospital of Eastern Ontario

Benoît Chabot

Dr. Kym Boycott

Associate Professor

Faculty of Medicine, Researcher, Research Institute of the Children’s Hospital of Eastern Ontario

Benoît Chabot

Dr. Serge Rivest

Director of the University Hospital Research Centre (CHU)

Bernard Brais

Dr. Bernard Brais

Neurogeneticist

Researcher at the Montreal Neurological Institute, McGill University

Genevièvre Bernard

Dr. Geneviève Bernard

Neuropaediatrician

The Montreal Children’s Hospital, McGill University Health Centre

Grants

To benefit from the Foundation’s financial support, all researchers or students interested in Leukodystrophies must complete a grant application form.

Our scientific partners