Maria Kefalas became a patient advocate and philanthropist for gene therapy after the diagnosis of her youngest child, Calliope, with a neurodegenerative genetic disorder called metachromatic leukodystrophy. She is the founder of Cure MLD and the Calliope Joy Foundation and is the author of numerous books and articles including her memoir Harnessing Grief (Beacon Press, 2021). Ms. Kefalas’s work has been featured on CBS Sunday Morning with Jane Pauley, STAT, NPR, and Slate.  Her advocacy has been recognized by the National Organization of Rare Disorders (NORD).