The Inchstone Project Steering Committee
Subject Matter Experts
Madison Berl, PhD, ABPP
Neuropsychologist
Children's National
Madison is Director of Research in Pediatric Neuropsychology at Children’s National and board certified in Clinical Neuropsychology. Her work focuses on epilepsy, neuroimaging, and neuropsychology, with leadership in multiple NIH- and foundation-funded studies.
Nicole Sirkot-Delinsky, MEd
Special Education Specialist
DC Public Schools
Nicole is a Special Education Specialist at DC Public Schools with 14 years of experience. She holds advanced TEACCH certification and specializes in severe disabilities, educational rights, and student advocacy, including founding DCPS’s first Medical and Education Support Classroom.
Scott Demarest, MD, MSCS
Pediatric Neurologist
Children's Hospital Colorado
Scott is Chief Precision Medicine Officer at Children’s Hospital Colorado and Associate Professor of Pediatrics and Neurology. Board certified in Child Neurology and Epilepsy, his research targets precision therapies for epilepsy and neurogenetic conditions.
Amanda Johnson, MA
Executive Director of the ARRE Foundation
Amanda Johnson is Executive Director of the ARRE Foundation, leading efforts to accelerate research and improve quality of life for those with ASXL-related disorders. She brings over 15 years of nonprofit leadership in fundraising, program development, and strategic partnerships.
John M. Schreiber, MD, FAES
Associate Chief of Epilepsy at Children’s National
John is Associate Chief of Epilepsy at Children’s National and Director of the Epilepsy Genetics Program. He leads clinical trials and research in genetically mediated epilepsies, with a focus on channelopathies and neurogenetic disorders.
Simon Rogers
Clinical Development Strategist
A Little Better, Co.
Simon is Founder and CEO of A Little Better Co, where he drives strategic initiatives that accelerate research, innovation, and advocacy across environmental sustainability, human health, and social progress—amplifying novel ideas with measurable, mission-driven impact.
Juliane K. Mills, MS, MPH
Senior Director, Therapeutic Strategy Lead, Rare Disease at Worldwide Clinical Trials
Juliane is a rare disease clinical research strategist with over 23 years of experience designing and operationalizing patient-focused Phase I–IV trials. She champions accessible, community-driven studies and has guided research capacity-building across industry and advocacy sectors.
Christy Zigler, PhD, MSEd
Psychometrician
Duke University
Christy is Adjunct Associate Professor in Population Health Sciences and an independent investigator specializing in patient-centered outcomes. She develops innovative measurement strategies for pediatrics, rare diseases, and clinical trials, advancing meaningful data collection through novel qualitative and quantitative methods.
Lynnley W. Moore, MA, CCC-SLP, CBIS
Manager of Therapy Services at Kennedy Krieger Institute
Lynnley is Manager of Therapy Services at Kennedy Krieger Institute. A certified brain injury specialist, she brings over 30 years of experience in pediatric rehabilitation, advancing outcomes through interdisciplinary care and leadership in brain injury recovery programs.
Amanda Luddeke, MS-SLP-CCC
Speech Language Pathologist
Building Kid Steps
Amanda is Owner and Speech-Language Pathologist at Building Kid Steps. With expertise in AAC, autism, and assistive tech, she blends clinical excellence with a heartfelt mission to empower children and families through compassionate, individualized care.
Amanda Moore, MA
REN Coordinating Committee
Amanda is CEO of the Angelman Syndrome Foundation, leading national efforts to accelerate research and therapeutic development. With a background in organizational leadership and global strategy, she champions cross-sector collaboration to advance treatments for Angelman syndrome.
Cynthia F. Salorio, PhD, ABPP
Co-Director of Neuropsychology at Kennedy Krieger Institute
Cynthia is Co-Director of Neuropsychology at Kennedy Krieger Institute and Associate Professor at Johns Hopkins. A board-certified pediatric neuropsychologist, her research focuses on cognitive and functional outcomes in epilepsy, brain injury, and complex neurological conditions in children.
Patient Advocacy Group Leaders
Lisa Manaster
CACNA1A Foundation President
Lisa is President and founding partner of the CACNA1A Foundation. With a background in special education and LEND leadership training, she advocates for research advancement and therapeutic discovery to improve outcomes for individuals with CACNA1A-related disorders.
Karen Utley, RN
President & Co-Founder of the
CDKL5 Foundation
Keith McArthur
CureGRIN CEO and Board Member
Keith McArthur is Executive Director of CureGRIN and a leading advocate for GRIN disorder research. Drawing from senior leadership experience and personal motivation as a GRIN1 parent, he drives global collaboration to accelerate discovery and develop curative treatments.
Nuala Summerfield
Founder of Schinzel-Giedion Syndrome Foundation
Nuala Summerfield, MRCVS, is Founder and Chair of Trustees of the Schinzel-Giedion Syndrome Foundation. A veterinary surgeon with clinical research experience, she leads global efforts to accelerate translational research and therapeutic development for children with Schinzel-Giedion Syndrome.
Leah Schust
President& Founder of the Families SCN2A Foundation
Leah Schust is President of the FamilieSCN2A Foundation, applying over 20 years of healthcare administration expertise to advance SCN2A research. She forges critical partnerships with scientists and industry to accelerate discovery, clinical trials, and novel therapeutic development for SCN2A disorders.
Gabi Conecker, MPH
International SCN8A Alliance
Gabi Conecker, MPH, is Executive Director and Co-founder of Decoding Developmental Epilepsies. With nearly 20 years in public health, she leads global efforts to accelerate SCN8A and DEE research and transformative care.