A Partnership to Fund Research for Hereditary Ataxias

FOR IMMEDIATE RELEASE

Montreal, February 28, 2023 – It is with great pleasure that Génome Québec, Ataxia Canada and Muscular Dystrophy Canada join forces in order to create a funding program for research on hereditary ataxias.

The goal of this program is to meet the needs of people affected by these rare neurological diseases, to allow them to benefit from genomic innovations and to encourage the development of innovative therapies. This program would support the objectives and orientations of the federal and provincial governments, notably by accelerating therapeutic innovation (Politique québécoise pour les maladies rares) and by presenting a concrete alternative for the creation of new drugs for the treatment of rare diseases (Building a National Strategy for Drugs for Rare Diseases: What We Heard from Canadians).

This partnership will not only mobilize the research community in the field, but also undertake a co-development approach in collaboration with foundations representing people affected by ataxia. This alliance will thus contribute to the democratization of research while increasing public awareness of ataxias.

This program will only be open to Québec researchers; more information will be available in the spring.

Quotes

“We look forward to this partnership and program with great optimism. Genomics has great potential in the context of developing new therapies. The use of gene information can help identify more promising targets for new drugs, speed up the treatment of people with the right therapy and reduce research and development costs.”

Stéphanie Lord-Fontaine, Vice-President, Scientific Affairs at Génome Québec

“For 50 years, the flame of hope for a life without ataxia, lit by the founder Claude St-Jean, has been burning among the ataxic community. It is with enthusiasm that we are pleased to announce this innovative program on hereditary ataxias. By collaborating with partners with similar missions to ours, we want to continue to propel research and benefit from an important lever for the hard-earned donations of our community. Ataxia Canada is 50 years of constant scientific progress towards a cure. We believe that genomic technologies are essential to eradicate ataxias and that their future is promising. Because science advances, technologies progress, and life is stronger than anything else, we do everything possible to make our mission a reality.“

François-Olivier Théberge, Chief Executive Officer of Ataxia Canada

“Many rare neurological diseases, like Friedreich ataxia, lack Health Canada-approved treatments. For Muscular Dystrophy Canada, it has long been a priority to support innovative research that is conducted in Canada and has the potential to improve diagnosis and inform treatment and management. We are delighted that Genome Quebec and Ataxia Canada share this priority and that together our funding will serve as a building block in maximizing support for cutting-edge genetics and genomics research, which will help fill gaps in our understanding of such rare conditions, promote drug discovery and bring new research transferrable findings and resources to the community.”

Homira Osman, Vice President, Research and Public Policy Muscular Dystrophy Canada

About Génome Québec

Génome Québec’s mission is to catalyze the development and excellence of genomics research and promote its integration and democratization. It is a pillar of the Québec bioeconomy and contributes to Québec’s influence and its social and sustainable development. The funds invested by Génome Québec are provided by the Ministère de l’Économie et de l’Innovation du Québec (MEI), the Government of Canada, through Genome Canada, and private partners. To learn more, visit genomequebec.com.

About Ataxia Canada

Ataxia Canada’s mission is the well-being of people with familial ataxia, to contribute to the research of new diagnostic tools, to the development of promising treatments and to bring the ataxia community in Canada closer together. For more information, visit lacaf.org.

About Muscular Dystrophy Canada

Muscular Dystrophy Canada’s mission is to enhance the lives of those impacted with neuromuscular disorders by continually working to provide ongoing support and resources while relentlessly searching for a cure through well-funded research. To learn more about Muscular Dystrophy Canada, please visit muscle.ca or call our toll-free number at 1-800-567-2873.

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