Board of Trustees
CURE SYNGAP1 State Ambassador, New York
Wednesday Warriors Coordinator
Allison Hirsch Hadar is a registered nurse, special needs advocate, and devoted mother to her three children, Liam and twins Emma and Dylan. She lives in Manhattan, New York with her husband, Itay, and their family. Allison’s life and mission were profoundly reshaped when her daughter Emma was diagnosed with SYNGAP1-Related Disorders (SRD) shortly after her first birthday in August 2022. The day after Emma’s diagnosis, Allison discovered CURE SYNGAP1, a moment that helped her realize she was not alone.
Allison began her career in oncology research at Memorial Sloan Kettering Cancer Center, where she worked as a research coordinator before transitioning into clinical nursing. As a registered nurse, she specialized in neurology, neurosurgery, and Neuro ICU care, treating patients with high acuity neurological conditions, including primary and metastatic brain tumors and other complex neuro-oncologic conditions. She holds a B.S. in Nursing from SUNY Downstate and a B.A. in Psychology from the University of Delaware.
Drawing on her clinical training, advocacy experience, and lived journey as a parent, Allison co-founded Reimagine Together, a NYC-based concierge advocacy service dedicated to empowering, supporting, and guiding families navigating rare disease and special needs.
Emma’s diagnosis and finding CURE SYNGAP1 ignited her passion for advocacy, raising awareness, and advancing research to drive progress toward treatments and ultimately a cure. She is committed to ensuring no family faces this journey alone and to building a future where children with SYNGAP1 can live the lives they deserve.
“Emma changed the course of my life and my career. As a nurse, I understood the medical complexity, but as a parent I experienced how overwhelming and isolating this journey can be. I am committed to turning that experience into action, helping drive and advance research toward treatments and ultimately a cure for SYNGAP1. Our children deserve full, meaningful lives, and I will move mountains to help make that future possible.”
Read Emma’s Warrior Story here.
Email: allison@cureSYNGAP1.org