(as of June 13, 2013)
Margaret Anderson,
Executive Director, FasterCures/The Center for Accelerating Medical
Solutions, Washington, DC
Rebecca Anhang-Price, PhD, Associate Policy Researcher, RAND Corporation, Chevy Chase,
MD
E. Martina Bebin, MD, MPA, pediatric neurologist/epileptologist, Co-Director, TSC Clinic,
University of Alabama at Birmingham, Birmingham, AL
John J. Bissler, MD, pediatric nephrologist, TSC Clinic, Children's Hospital Medical Center,
Cincinnati, OH
Joe Blair, Parent of a TSC Child and Author, By the Iowa Sea
John Blenis, PhD, Department of Cell Biology
Harvard Medical School, Boston, MA
Anna W. Byars, PhD, pediatric neuropsychologist, TSC Clinic, Cincinnati Children’s Hospital
Medical Center, Cincinnati, OH
Paul A. Caruso, MD, pediatric neuro-radiologist, Massachusetts General Hospital, Boston, MA
Harry T. Chugani, MD, pediatric neurologist/epileptologist, Director, TSC Clinic, Children's
Hospital of Michigan, Detroit, MI
Mary Conroy, RN, TSC Clinic, Minnesota Epilepsy Group, St. Paul MN
Peter Crino, MD, PhD, adult neurologist/epileptologist, Temple University School of Medicine,
Department of Neurology, Philadelphia, PA
Diane Danis, MD, MPH, developmental and behavioral pediatrician, Pasadena, CA
Ann R. Davis, MD, gynecologist, Director, Family Planning Fellowship, Columbia University
Medical Center, New York, NY
Mauricio Delgado, MD, pediatric neurologist, Director of Neurology, Texas Scottish Rite
Hospital for Children, Dallas, TX
Petrus J. de Vries, MBChB, MRCPsych, PhD, child and adolescent psychiatry, University of
Cape Town, Division of Child and Adolescent Psychiatry, Rondebosch, Cape Town, South
Africa

Orrin Devinsky, MD, adult neurologist/epileptologist, TSC Clinic, NYU Epilepsy Center, New
York, NY
Francis J. DiMario, Jr., MD, pediatric neurologist, Director, TSC Clinic, Connecticut Children's
Medical Center, Hartford, CT
Diane Dorman, Vice President of Public Policy, NORD, Washington, DC
David W. Dunn, MD, psychiatrist/pediatric neurologist, Riley Hospital for Children, Indiana
University School of Medicine, Indianapolis, IN
Yolande Erickson, Esq., Conservatorship Program Attorney, Bet Tzedek Legal Services, Los
Angeles, CA
Kevin C. Ess, MD, PhD, pediatric neurologist/epileptologist, Director, TSC Clinic, Vanderbilt
University, Nashville, TN
David Neal Franz, MD, pediatric neurologist, Director, TSC Clinic, Children's Hospital Medical
Center, Cincinnati, OH
Emily Freeman, PhD, Director, Health Behavior and Program Evaluation, Pfizer, New York, NY
Michael D. Frost, MD, pediatric neurologist/epileptologist, Director, TSC Clinic, Minnesota
Epilepsy Group, P.A., Saint Paul, MN
Nichole Goble, Senior Program Associate, Employment Programs, The ARC
Patricia A. Gibson, MSSW, Director, Comprehensive Epilepsy Information Service, Wake
Forest University School of Medicine, Baptist Medical Center, Department of Neurology,
Winston Salem, NC
Tanjala T. Gipson, MD, pediatric neurologist/neurodevelopmental pediatrician, Director, TSC
Clinic, Kennedy Kreiger, Johns Hopkins, Baltimore, MD
Jennifer Glass, MS, CGC, genetic counselor, University of Cincinnati College of Medicine,
Cincinnati, OH
Bonnie Gould Rothberg, MD, PhD, MPH, Assistant Professor, Medical Oncology, Yale Cancer
Center, New Haven, CT
Elizabeth P. Henske, MD, oncologist, Brigham and Women's Hospital, Harvard Medical
School, Boston, MA
Gregory Holmes, MD, pediatric neurologist/epileptologist, Chair, Department of Neurological
Sciences, University of Vermont College of Medicine, Burlington, VT
Dena Hook, Director of Advocacy and Education, TS Alliance, Silver Spring, MD
John Hulbert, MD, urologist, Co-Director, TSC Clinic, Urologic Physicians, PA, TSC Parent,
Edina, MN

Anna Jansen, MD, PhD, UZ Brussel Hospital, Brussels, BE
Shafali Spurling Jeste, MD, behavioral child neurologist, UCLA Semel
Institute/Neuropsychiatric Institute, Los Angeles, CA
Sergiusz Jóźwiak, MD, PhD, pediatric neurologist, Chair, Department of Neurology, Children’s
Memorial Health Institute Warsaw, Poland
Russell G. Katz, MD, Director, Division of Neurology Products, FDA, Washington, DC
Chris Kingswood, MBBS, MRCP, FRCP, nephrologist, Brighton & Sussex University Hospitals
Trust, Renal Unit, TSC Parent, Brighton, UK
Mary Kay Koenig, MD, pediatric neurologist, University of Texas Health Science Center,
Houston, TX
Michael Kohrman, MD, pediatric neurologist, Director, TSC Clinic, University of Chicago,
Chicago, IL
Bruce Korf, MD, PhD, geneticist, Co-Director, TSC Clinic, University of Alabama Birmingham,
Birmingham, AL
Darcy A. Krueger, MD, PhD, pediatric neurologist, Cincinnati Children’s Hospital Medical
Center, Cincinnati, OH
David J. Kwiatkowski, MD, PhD, oncologist, Genetics Lab, Hematology Division, Brigham and
Women's Hospital, Harvard Medical School, Boston, MA
Story C. Landis, PhD, Director, National Institute for Neurological Disorders and Stroke,
National Institutes of Health, Bethesda, MD
Jonathan Lipton, MD, PhD, neurologist, Boston Children’s, Boston, MA
Jonathan Lucas, Senior Program Associate, Employment Programs, The ARC
Jeffrey MacKeigan, PhD, Associate Professor and Head, Laboratory of Systems Biology, Van
Andel Research Institute, Grand Rapids, MI
Gary W. Mathern, MD, pediatric neurosurgeon, Brain Research Institute, UCLA, Los Angeles,
CA
William McClintock, MD, pediatric neurologist, Director, TSC Clinic, Children's National
Medical Center, Fairfax, VA
Ian O’Neil Miller, MD, pediatric neurologist, Co-Director, TSC Clinic, Miami Children’s Hospital,
Miami, FL
Greg Mlynarczyk, DDS, dentist, TSC Parent, Santa Rosa, CA

Joel Moss, MD, PhD, pulmonologist, National Heart, Lung, and Blood Institute, National
Institutes of Health, Bethesda, MD
Rob Moss, Co-Founder, Seizure Tracker, Arlington, VA
Jo Anne Nakagawa, Director, Clinical Projects and TSC Clinic Liaison, TS Alliance, Silver
Spring, MD
Katherine L. Nathanson, MD, geneticist, Director, TSC Clinic, University of Pennsylvania,
Department of Medicine, Philadelphia, PA
Peter Newberry, MD, psychiatrist, Massachusetts General Hospital, Boston, MA
John Nicholson, MD, cardiologist and investor, TSC Parent, Greenwich, CT
Hope Northrup, MD, geneticist and pediatrician, Director, TSC Clinic, The University of Texas
Medical School at Houston, Houston, TX
Candy Opalka, ARC Upstate New York, NY
Anne Pariser, MD, Associate Director for Rare Diseases, FDA, Washington, DC
Kelly Piacenti, Director, MetLife Center for Special Needs, Somerset, NJ
Santo Pino, EdD, Director, Pino Educational Consulting Inc., Naples, FL
Judith Prestifilippo, MD, Senior Medical Director, US Clinical Development Medical Affairs,
Novartis Oncology, East Hanover, NJ
Gayatri Rao, MD, JD, Director for the Office of Orphan Products Development, FDA,
Washington DC
James J. Riviello, Jr, MD, pediatric neurologist/epileptologist, Director, TSC Clinic, New York
University Langone Medical Center, Department of Neurology, New York, NY
E. Steve Roach, MD, pediatric neurologist, Co-Director, TSC Clinic, Ohio State University,
Columbus, OH
Steven L. Roberds, PhD, Chief Scientific Officer, TS Alliance, Silver Spring, MD
Kari Luther Rosbeck, President and CEO, TS Alliance, Silver Spring, MD
Stephen Rose, PhD, Chief Scientific Officer, Foundation Fighting Blindness, Columbia, MD
Dom Ruscio, Partner, CRD Associates, LLC, Washington, DC
Mustafa Sahin, MD, PhD, pediatric neurologist, Director, TSC Clinic, Children's Hospital,
Boston, MA
Peter Saltonstall, President and CEO, National Organizaiton for Rare Disorders, Danbury, CT

Julian Sampson, DM, FRCP, FMedSci, geneticist, Professor and Head of Department, Medical
Genetics, Institute of Medical Genetics, Wales College of Medicine, Cardiff University, Cardiff,
Wales, UK
Joshua Samuels, MD, pediatric nephrologist, Associate Professor of Pediatrics, University of
Texas School of Public Health, Houston, TX
Steven P. Sparagana, MD, pediatric neurologist, Director, TSC Clinic, Texas Scottish Rite
Hospital for Children, Dallas, TX
Sarah J. Spence, MD, PhD, pediatric neurologist, Director, Autism Center, Boston Children’s,
Boston, MA
Elizabeth A. Thiele, MD, PhD, pediatric neurologist/epileptologist, Director, TSC Clinic, The
Carol and James Herscot Center for Children and Adults with TSC, Massachusetts General
Hospital, Department of Neurology, Boston, MA
Anna Tinnerello, Project Director, Marion County Help Me Grow, Marion, OH
Dee Triemer, Director of Special Events and Corporate Partnerships, TS Alliance, TSC Parent,
Atlanta, GA
Theresa Varnet, Esq., Founder, Spain, Spain & Varnet PC, Chicago, IL
Mark Vieth, Senior Vice President, CRD Associates, LLC, Washington, DC
Howard Weiner, MD, pediatric neurosurgeon, TSC Clinic, New York University Langone
Medical Center, Division of Pediatric Neurosurgery, New York, NY
James W. Wheless, MD, pediatric neurologist/epileptologist, LeBonheur Children’s Hospital,
University of Tennessee, Memphis, TN
Vicky H. Whittemore, PhD, Crofton, MD
Steven M. Wolf, MD, pediatric neurologist/epileptologist, Co-Director, TSC Clinic, Beth
Israel/Roosevelt Hospital, New York, NY
Michael Wong, MD, PhD, pediatric neurologist/epileptologist, Director, TSC Clinic,
Washington University School of Medicine, St. Louis, MO
Joyce Y. Wu, MD, pediatric neurologist/epileptologist, Director, TSC Clinic, University of
California, Los Angeles, Los Angeles, CA
Wenbo Zhang, MD, PhD, TSC Clinic, Director of Magnetic Source Imaging (MSI), Minnesota
Epilepsy Group, St. Paul, MN