Our Staff and Board

Staff *

Margie Frazier, PhD

Executive Director


Becky Hetteberg, MA, MSW, LISW-S

Family Support Officer


Tracy Kirby

Director of Development


Noreen Murphy, MA

Project Coordinator



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 *

Sandra Hofmann, MD, PhD

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

Jonathan Cooper, PhD

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

Susan L. Cotman, PhD

Assistant Professor of Neurology, Harvard Medical School and Massachusetts General Hospital
Harvard Medical School, Cambridge and Massachusetts General Hospital, Boston, MA

Beverly L. Davidson, PhD

Professor of Medicine, Neurology and Physiology & Biophysics,
University of Iowa

Mark S. Sands, PhD

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

David E. 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

Katherine Sims, MD


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

Heather Adams, PhD

Child Neuropsychologist
University of Rochester, Rochester, NY

Rose-Mary Boustany, MD

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

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