Our Staff and Board

Staff *

Margie Frazier, PhD, LISW-S

Executive Director

(800) 448-4570 ext. 11 | Direct: (614) 973-6011


Tracy Kirby

Director of Development

(800) 448-4570 ext. 13 | Direct: (614) 973-6013


Noreen Murphy, MA

Project Coordinator

(800) 448-4570 ext. 14 | Direct: (614) 768-1159



Board of Directors *

Rob Geer



Tracy VanHoutan

Vice President

Joel Karg


Mike Collins


Kristen Drago, RN, BSN, CHPPN

At Large

Tony Ferrandino

At Large

Donna Fogle

At Large

Kate Haller

At Large

Bob Jensen

At Large

David Pearce, PhD

At Large

Darlene Royalty

At Large

Barbara Wuebbels, RN, MS

At Large


Medical Advisory Board *

Heather Adams, PhD

Child Neuropsychologist
University of Rochester, Rochester, NY

Rose-Mary Boustany, MD

Director, Neurogenetics
Pediatric Neurology and Genetics
American University, Beirut, Lebanon

Jonathan Cooper, PhD

Professor at the Institute of Psychiatry
King’s College London, London, UK

Susan Cotman, PhD

Assistant Professor of Neurology, Harvard Medical School
Assistant in Neuroscience, Department of Neurology, Center for Human Genetic Research,
Massachusetts General Hospital, Boston, MA

Beverly Davidson, PhD

Director of the Center for Cell and Molecular Therapy, Arthur V. Meigs Chair in Pediatrics,
Children's Hospital of Philadelphia,
Philadelphia, PA

Sandra Hofmann, MD, PhD

Professor, Internal Medicine, Molecular Genetics
University of Texas Southwestern Medical Center,
Dallas, TX

Emily de los Reyes, MD

Pediatric Neurologist
Nationwide Children’s Hospital
Columbus, OH

Jonathan Mink, MD, PhD

Director, University of Rochester Batten Diseases Diagnostic and Clinical Research Center
University of Rochester, Rochester, NY

Mark Sands, PhD

Professor, Department of Medicine, Division of Oncology
Washington University in St. Louis, St. Louis, MO

Katherine Sims, MD

Director, Developmental Neurogenetics Clinic
Massachusetts General Hospital, Boston, MA

David Sleat, PhD

Associate Professor
Center for Advanced Biotechnology and Medicine
University of Medicine and Dentistry of New Jersey-Robert Wood Johnson Medical School, Piscataway, NJ