Lisa is Co-Founder and President of the CACNA1A Foundation. Her commitment to the CACNA1A community is deeply personal. After years of genetic testing, her daughter Emily was diagnosed with a CACNA1A-related disorder in 2017 at the age of 20. That experience led Lisa to help establish the CACNA1A Foundation in 2020 with a mission to build community, advance understanding of CACNA1A-related disorders, and accelerate the path toward effective treatments.

Lisa has worked as both an advocate and a special educator and received interdisciplinary leadership training in the field of developmental disabilities as a Fellow in the Leadership Education in Neurodevelopmental and Related Disabilities (LEND) program at the Westchester Institute for Human Development. She holds a Bachelor of Arts in History from Cornell University and an MA from Teachers College, Columbia University.

Lisa lives in Connecticut with her husband and is the mother of three adult children and grandmother of two. She is passionate about bringing together families, clinicians, researchers, and industry partners to improve the lives of those affected by CACNA1A-related disorders and believes deeply in the power of families sharing their stories to drive meaningful change.

Lisa@cacna1a.org