Steering Committee
Subject Matter Experts
Neuropsych
Children's National Hospital
Madison Berl, PhD, ABPP
Neuroscientist, Pediatric Neurology
Angelman
Outcome Development
Robert Carson, MD, PhD
Pediatric Neurologist
Children's Hospital Colorado
Scott Demarest, MD
TVI/CVI
Connections Beyond Sight and Sound
Rebecca Hommer, EdD
Speech Language Pathologist
Building Kid Steps
Amanda Luddeke, SLP
REN Coordinating Committee
Amanda Moore
Clinical Development
Strategist A Little Better, Co.
Simon Rogers
Special Education Specialist
DC Public Schools
Nicole Sirkot-Delinsky
Medical Geneticist
Boston Children's Hospital
Wen-Hann Tan, BMBS
Psychometrician
Duke University
Principal Investigator ORCA Study
Christy Zigler, PhD, MSEd
Patient Advocacy Group Leaders
CACNA1A Foundation President
Lisa Manaster
CDKL5 Foundation President and Co-Founder
Karen Utley
CureGRIN CEO and Board Member
Keith McArthur
Schinzel-Giedion Syndrome Foundation Founder and Chair of Trustees
Nuala Summerfield
Families SCN2A Foundation President, Founder, and Research Committee Chair
Leah Schust
International SCN8A Alliance President and Co-Founder
Gabi Conecker, MPH
WWOX Foundation Director and President