MEAction – Volunteer
Jennifer Spotila joined the PCORI Ambassador Program in 2017 after learning more about patient-centered research in general and the work of PCORI specifically. She has lived with myalgic encephalomyelitis (also known as ME/CFS, or chronic fatigue syndrome) for almost 25 years, and has been involved in research as a subject, an applicant, and a peer reviewer. Spotila has also served as a patient representative on a Food and Drug Administration (FDA) Advisory Committee and has been a member of the FDA’s Patient Representative Program for more than five years. She has also been successfully treated for thyroid cancer and has been a caregiver to my husband since he suffered a stroke. Snyder is passionate about bringing patient voices into research and policy decision making. The people most affected by these decisions should be involved with them from the start.