Ambassador

Brandy Parker-McFadden

My Epilepsy Story – Staff Member

Years Involved in Patient Centered Research: 5-10 years
State: Tennessee

Brandy Parker-McFadden is a wife, mother, patient advocate, Executive Director/Founder of My Epilepsy Story (MES), a woman living with epilepsy, and a caretaker for her son who lives with autism.  She is a member of the American Epilepsy Society (AES) and the organization’s Epilepsy Leadership Council (ELC). Parker-McFadden is a member of the AES-ELC: Surveillance/Prevention Working Group and Membership Committee, and a consultant and patient advocate on both the Maternal Outcomes and Neurodevelopmental Effects of Antiepileptic Drugs (MONEAD) and the Collaboration for Outreach and Prevention Education (COPE) for Children with Epilepsy projects. Parker-McFadden became a PCORI Ambassador in 2014. In addition, she is also a member of the American Academy of Neurology: Epilepsy Quality Measure Development Work Group and American Academy of Neurology: Women with Epilepsy Guideline Work Group. She has been published in the American Academy of Neurology Journal for her work regarding the Updated Quality Measurement Set. Parker-McFadden testified before the Institute of Medicine (IOM) about her personal epilepsy story in 2011, which inspired her to found MES. She presents at hospitals and universities Grand Rounds throughout the United States, emphasizing the importance of patient-centered care. Parker-McFadden also presents on the importance of patient-driven research.

Involvement with PCORI

Research: Cognitive AED Outcomes in Pediatric Localization Related Epilepsy (COPE) – Advisory Member

Ambassador Interests

Health Conditions Health Conditions These are the broad terms we use to categorize our funded research studies; specific diseases or conditions are included within the appropriate larger category. Note: not all of our funded projects focus on a single disease or condition; some touch on multiple diseases or conditions, research methods, or broader health system interventions. Such projects won’t be listed by a primary disease/condition and so won’t appear if you use this filter tool to find them. View Glossary
Populations Populations PCORI is interested in research that seeks to better understand how different clinical and health system options work for different people. These populations are frequently studied in our portfolio or identified as being of interest by our stakeholders. View Glossary
Research Phases
State State The state where the project originates, or where the primary institution or organization is located. View Glossary

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