Role of Overcome Syngap1 in the funding ecosystem
Overcome Syngap1 is a patient-driven charitable organization created by families to respond to the rare genetic disorder caused by mutations in the SYNGAP1 gene. Operating through a registered charity in Canada and an association loi 1901 in France, the foundation’s core role is to raise funds and channel them into high-impact scientific and clinical research projects on SYNGAP1, while also providing information and community support to affected families.
The organization states that 100% of the funds it raises are used to support research, with volunteers handling governance, communications and events. Overcome Syngap1 has already financed or co-financed several research projects, including work at CHU Sainte-Justine in Montréal, McGill University, the University of Ottawa, and the Interdisciplinary Institute of Neurosciences (IINS) in Bordeaux. These projects explore fundamental mechanisms of the SynGAP protein, molecular pathways underlying intellectual disability, and how brain energy use and blood flow affect symptoms, with the aim of identifying potential therapies and better diagnostics.
Types of funding and supported projects
The association primarily provides project-based research funding to academic and hospital teams. Examples include a CAD 150,000 grant for small-molecule translational research led by Prof. Derek Bowie at McGill University, and long-term support for the research teams of Prof. Jacques Michaud and collaborators at CHU Sainte-Justine. In France, Overcome Syngap1 backs fundamental neuroscience research at the IINS in Bordeaux, led by teams working on the role and effects of SynGAP1 mutations on synapse function. It also collaborates with the Syngap Research Fund to co-fund projects such as those led by Prof. Baptiste Lacoste at the University of Ottawa.
Beyond direct lab-based research, Overcome Syngap1 supports initiatives like the EURAS project, which aims to identify and register SYNGAP1 patients across Europe, collect harmonized clinical data, conduct basic research on the biological consequences of the mutation, and test existing drugs that might improve SYNGAP1-related symptoms.
Target communities and impact
The foundation focuses on families and individuals worldwide living with SYNGAP1-related intellectual disability, epilepsy and autism spectrum features. It works closely with clinicians, geneticists and neuroscientists to accelerate diagnosis, improve clinical management and foster the development of targeted therapies. By funding research across several institutions and countries, Overcome Syngap1 helps build an international network of experts and contributes to global registries and collaborative projects.
Partnerships and geography
Overcome Syngap1 operates mainly from Canada and France but supports and collaborates with researchers internationally. It partners with universities, hospitals and dedicated rare-disease organizations such as the Syngap Research Fund. Donations in Canada are processed directly by the charity, while in France contributions to SYNGAP1 research can be made through the Fondation de l’Université de Bordeaux, which issues tax receipts and channels funds to designated research projects.