Scientific Advisory Board

“I have enjoyed being a resource for families and also for clinicians around the country, emphasizing that this is NOT a terminal disease and that our patients do well with good medical management. I truly appreciate the willingness of our families to share their experiences with me so that I can relay these experiences to other families and clinicians.” -Amy R.U.L. Calhoun, MD




Amy R.U.L. Calhoun, MD

Assistant Professor of Pediatrics

University of Minnesota Medical School

Minneapolis, Minnesota



John Carey, MD, MPH

Professor of Pediatrics

University of Utah School of Medicine

Salt Lake City, Utah



Agatino Battaglia, MD, DPed, DNeurol

Adjunct Professor of Child Neuropsychiatry

University of Pisa

Pisa, Italy;

Adjunct Professor of Pediatrics

University of Utah School of Medicine

Salt Lake City, Utah;

Adjunct Professor of Pediatrics

University of South Dakota Sanford School of Medicine

Sioux Falls, South Dakota


Sarah South, Ph.D., FACMG

Medical Director, ARUP Laboratories

Cytogenetics, Microarray, Genetic Processing

Assistant Professor, Dept. Pediatrics and Pathology

University of Utah

Salt Lake City, UT


Oliver W.J. Quarrell, MD, FRCP

Consultant in Clinical Genetics

Department of Clinical Genetics

Sheffield Children’s Hospital

Sheffield, UK


Peter Hammond, Ph.D.

Professor, Molecular Medicine Unit

UCL Institute of Child Health

London, UK


Gene S. Fisch, Ph.D.

Senior Biostatistician

Research Professor,

Dept. Epidemiology & Health Promotion

NYU Colleges of Dentistry & Nursing



Hayat Mousa , MD, FAAP

Medical Director, Center for Advanced Research in Neuromuscular Gastrointestinal Disorders (C.A.R.I.N.G)

Director, Fellowship in the Advanced Training in Gastrointestinal Motility and functional Disorders

Associate Professor in Clinical Pediatrics, Ohio State University College of Medicine

Nationwide Children’s Hospital, Division of Gastroenterology

Columbus, OH


Christine Hills, MD

Pediatric Cardiology

Children’s Heart Clinic

Minneapolis, MN


Virginia S. Nelson, MD, MPH

Professor, Department of Physical Medicine and Rehabilitation

Director, Pediatric and Adolescent Rehabilitation

Medical Director, Pediatric Neurorehabilitation Day Treatment Program

University of Michigan Health System

Ann Arbor, MI


L. Miriam Pina, MD

Director Clinical Development

Sanofi Pasteur Inc.


Samuel D. Maldonado, MD, MPH, FAAP

Vice President

Janssen Research & Development

Pediatric Drug Development, Center of Excellence

Raritan, NJ


Rena Vanzo, M.S., L.C.G.C.


Megan Martin, M.S., L.C.G.C.


Mallory Sdano, M.S., L.C.G.C.


Melissa Fuller, M.S., L.C.G.C.


Christine N. Kleimola, M.S.


Rebecca Richardson, RN, BSN


Amanda Lortz

Executive Director

4P- Support Group



Site Design by: