Having the adolescent-onset form of Pompe the severity of his symptoms lies somewhere in the middle of the spectrum between the infantile-onset form and classic LOPD. It has allowed him to retain for the most part an independent lifestyle within limits and with modifications.
Luke joined the board of PSN in 2025 having previously volunteered within the Pompe community. He hopes his experience living with and managing the condition long-term will be of benefit both to this role and in terms of patient advocacy for Pompe in general.
Luke Fraser
Trustee
Posted On: 14/04/2025
Luke is a London-based teacher, musician and broadcaster who was first diagnosed with Pompe whilst a teen in the late 1990s and who has been receiving ERT since 2007.