The Cute Syndrome Foundation
Kacie Craig, MEd is the Executive Director of The Cute Syndrome Foundation. Her daughter, Stella, was diagnosed with an ultra-rare genetic disorder called SCN8A at five months old and it was then her passion for advocacy was ignited. Craig began volunteering for TCSF in 2018 and joined the foundation’s executive leadership team in 2020. It was in early 2022 that she transitioned from her long standing career in radiography education to a full time advocate. Kacie and Stella have both been featured in epilepsy awareness segments on KMOV Channel 4 News in St. Louis, Missouri and KY3 News in Springfield, Missouri.
Department of Neurology, Washington University School of Medicine
Sara Hamilton is the Clinic Manager for the Department of Neurology at Washington University School of Medicine, where she oversees clinical operations for the Department’s outpatient pediatric clinics. Sara is also the mother of a child with Fragile X Syndrome who has worked closely with local, state, and national organizations focused on Fragile X education and advocacy for more than a decade. Sara has served as the Vice President and President of the Fragile X Resource Center of Missouri, a Community Support Network Leader with The National Fragile X Foundation, and as a Family Ambassador for FRAXA, the national organization focused on advancing Fragile X research.
Center for Biologics Evaluation and Research (CBER)
U.S. Food and Drug Administration (FDA)
Peter Marks received his graduate degree in cell and molecular biology and his medical degree at New York University and completed Internal Medicine residency and Hematology/Medical Oncology training at Brigham and Women’s Hospital in Boston. He has worked in academic settings teaching and caring for patients and in industry on drug development and is an author or co-author of over 100 publications. He joined the FDA in 2012 as Deputy Center Director for CBER and became Center Director in 2016. Over the past several years he has been integrally involved in the response to various public health emergencies and in 2022 he was elected a member of the National Academy of Medicine.
Head, Center for Ectodermal Dysplasias
Department of Molecular Pediatrics
University Hospital Erlangen, Erlangen, Germany
Holm Schneider obtained his MD from the University of Leipzig and received German board certifications in general pediatrics, emergency medicine and neonatology. He was research fellow at Imperial College London, U.K., registrar at the University Hospital Erlangen, Germany, and Professor of Experimental Neonatology at Innsbruck Medical University, Austria, before returning to the University Hospital Erlangen where he has been working as Professor of Pediatrics since 2008. He is head of the interdisciplinary Center for Ectodermal Dysplasias Erlangen, the German national reference center for ectodermal dysplasias and p63-associated disorders. The research of his team is dedicated to novel therapeutic approaches to severe genodermatoses. Schneider pioneered the prenatal drug therapy of genetic diseases and conducted numerous preclinical and investigator-initiated or industry-funded clinical studies on life-threatening congenital disorders. He received prestigious honors and awards, including the Gottron-Just Science Prize, the Gold medal of the Union of European Neonatal and Perinatal Societies, and the Care-for-Rare Science Award.