Karen Kelm

MSc

President & CEO

Fragile X Canada

Karen Kelm is a mother, researcher, and advocate whose leadership is transforming how Canada understands and supports Fragile X Syndrome and related conditions. As President and CEO of Fragile X Canada, Karen has guided the organization through a powerful reinvention, from a research-funding foundation to a national hub advancing collaboration, innovation, and community-driven change.

Drawing on her lived experience as a mother of three children with Fragile X Syndrome and her academic background (MSc in Medical Sciences, University of Alberta), Karen bridges science and real-world experience to ensure families, clinicians, researchers, and policymakers work together toward meaningful impact.

Karen’s expertise in knowledge translation and family engagement in research has been strengthened through formal training with the Family Engagement in Research (FER) Course at McMaster University and her participation in the EURORDIS Open Academy of Learning in Rare Diseases Europe. She is deeply committed to translating evidence into action—ensuring that family voices and lived experiences shape both research priorities and health system design.

Under her leadership, Fragile X Canada is launching several landmark initiatives, including the national Fragile X Registry, the ECHO knowledge-sharing program, the “Connecting Fragile X” national conference, and the newly funded James Lind Alliance Priority Setting Partnership, supported by CIHR.

Karen’s work reflects a deep belief that progress comes from partnership and that by building expertise, celebrating strengths, and inspiring hope and possibility, we can create a future where Fragile X is fully understood and supported across all stages of life.