Sean is the CEO and a founding director of the Mito Foundation, an organisation that supports and advocates for the Australian mitochondrial disease community while driving research into mitochondrial disease to find preventions, treatments, and cures. He is also a founding director of the Childhood Dementia Initiative, an organisation driving for systemic change to improve outcomes for children with dementia and their families.

Sean chairs the Australian Genomics Community Advisory Group, is a member of the Involve Australia working group and has been involved in several other advisory and working groups, bringing his lived experience to advocate for community perspectives and priorities in health and research matters.