“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
Chair:
Amy R.U.L. Calhoun, MD
Clinical Assistant Professor
Medical Consultant for Newborn Screening
Division of Medical Genetics
Stead Family Department of Pediatrics
University of Iowa Health Care
Co-Chair:
John Carey, MD, MPH
Professor of Pediatrics
University of Utah School of Medicine
Salt Lake City, Utah
Members:
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
VP, Laboratory Sciences
AncestryDNA
Karen S. Ho, PhD
Principal Scientist, Translational Research
Lineage;
University of Utah
Department of Pediatrics
Division of Medical Genetics Adjunct Assistant Professor
Salt Lake City, UT
Rena Vanzo, M.S., L.C.G.C.
Vice President of Clinical Services
Lineagen
Salt Lake City, UT
Dr. Mekel Harris, Ph.D., NCSP, PMH-C
Psychologist
Associate Professor
Tedx Speaker
Megan Martin, M.S., L.C.G.C.
Lineagen
Salt Lake City, UT
Mallory Sdano, M.S., L.C.G.C.
Humana
Sylvia Renfro,
President
4p- Support Group
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
NY, NY
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
Christine N. Kleimola, M.S.
Rebecca Richardson, RN, BSN