Megan O'Boyle is the parent of a 15-year-old daughter with Phelan-McDermid Syndrome (PMS). This diagnosis includes autism, intellectual disability, epilepsy, ADHD, and other medical conditions. She is the Principal Investigator for the Phelan-McDermid Syndrome Data Network (PMS_DN, PCORnet) and the Phelan-McDermid Syndrome International Registry (PMSIR). The web-based PMSIR currently has over 70% of the PMS Foundation families registered. 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. She advocates for data sharing, collaborating with other advocacy groups, sharing resources and streamlining IRB practices and policies.