The Leukodystrophies Foundation is a Canadian charitable foundation created in 2006 by the parents of a child with leukodystrophy. It funds medical research to find treatments for this rare degenerative disease and provides psychosocial support to affected families. The foundation has invested over one million dollars in research projects and collaborates with major Quebec and Canadian research institutions. View Leukodystrophies Foundation's website for more information.
The Leukodystrophies Foundation acts as a charitable organization that raises funds to finance medical research specifically focused on leukodystrophies, a group of rare genetic degenerative diseases affecting the nervous system. As a patient organization, it bridges the gap between affected families and the scientific research community.
The foundation supports research projects through a formal grant application process. Researchers interested in leukodystrophies can apply for funding by completing a grant application form. Priority is given to projects targeting the identification of genetic causes, development of treatments, and clinical trials.
The foundation is governed by a diverse board of directors comprising business professionals, philanthropy management experts, researchers, and parents of affected children. Key founding members include Marjolaine Verville (cofounder and board president) and Eric Tailleur (cofounder).
Founded in 2006, the foundation has achieved significant milestones: funded the first clinical and genetic research on Quebec children with leukodystrophy in 2008; helped establish specialized clinics at the Montreal Children's Hospital and the Montreal Neurological Institute; contributed to the discovery of three genes responsible for leukodystrophies (POLR3A, POLR3B, POLR1C); and published the largest international collaborative study on POLR3-related leukodystrophy in 2014.
The foundation supports three main audiences: researchers through grant funding, affected children and their families through psychosocial support, and the broader rare disease community through awareness campaigns and advocacy.
The foundation collaborates with major Quebec and Canadian research institutions including Génome Québec, IRCM, CHUM, CUSM, CHUL, as well as international partners such as CARE for RARE and researchers from Amsterdam.