Amanda Parchim is a Dravet Syndrome Foundation Family Network Ambassador (Midwest Region) who lives in St. Anne, Illinois, with her husband, Rob, and their two children, McKinley (18) and Mason (15).
Amanda graduated from Eastern Illinois University with a bachelor’s degree in Consumer Affairs and a minor in Business Administration. She currently works as an assistant in a Living and Learning classroom.
Mason was diagnosed with a 2q24.3–2q31.1 deletion associated with Dravet syndrome, and his journey has shaped Amanda’s purpose and passion. She proudly calls Mason her hero, describing him as a true pillar of strength whose perseverance fuels her mission to support others in the Dravet community.
Amanda has been involved with the Dravet Syndrome Foundation for many years and is deeply committed to advancing awareness, connection, and hope. She enjoys helping with Steps Toward a Cure, attending DSF Conferences, and participating in Day of Dravet events. Amanda has a heartfelt passion for connecting with families, offering encouragement, and creating space for fellowship, discovery, and meaningful discussion. She believes these connections are essential when navigating life with a rare diagnosis and is honored to walk alongside other families on this journey.
Amanda has been involved with the Dravet Syndrome Foundation for many years and is deeply committed to advancing awareness, connection, and hope. She enjoys helping with Steps Toward a Cure, attending DSF Conferences, and participating in Day of Dravet events. Amanda has a heartfelt passion for connecting with families, offering encouragement, and creating space for fellowship, discovery, and meaningful discussion. She believes these connections are essential when navigating life with a rare diagnosis and is honored to walk alongside other families on this journey.