Karen Kelm

President & CEO

Karen Kelm is the President & Chief Executive Officer of Fragile X Canada, where she leads the Foundation’s national strategy, partnerships, programs, research engagement, advocacy, and organizational development.

Her leadership is grounded in more than 20 years of lived experience as the mother of three adults with Fragile X syndrome. This experience has given Karen a deep understanding of the realities families navigate across childhood, adolescence, adulthood, and the many transitions in between.

Karen holds a Master of Science in Medical Sciences from the University of Alberta. Her research explored the knowledge and expertise developed by mothers raising sons with Fragile X syndrome and how lived experience can inform more responsive healthcare, research, and support.

Karen works closely with individuals and families, researchers, clinicians, healthcare leaders, funders, and community organizations to strengthen Fragile X knowledge and build connections across research, care, and everyday life. Under her leadership, Fragile X Canada has expanded its national work in community engagement, knowledge mobilization, research participation, care improvement, and advocacy.

Karen believes that diagnosis should lead to more than an explanation. It should lead to trusted knowledge, coordinated support, meaningful connection, and opportunities for individuals and families to thrive across the lifespan.