Megan O’Boyle of the Phelan-McDermid Syndrome Foundation is a primary investigator (PI) for the Phelan-McDermid Syndrome (PMS) international registry and the PMS data network. The parent of an 18-year-old daughter with PMS, Megan is passionate about the value of the patient’s voice in research, drug development, clinical trial design, development of related legislation and quality of life decisions.