ICCRN Leadership

Scott Demarest, MD MSCS

Jenny Downs, BApplSci (Physio) MSc PhD

Scott Demarest, MD MSCS

ICCRN Director &

Principal Investigator,

Clinical Trials Readiness Study

Assistant Professor
Department of Pediatrics and Neurology

University of Colorado School of Medicine

Clinical Director

Precision Medicine

Children's Hospital Colorado

Tim Benke, MD PhD

Jenny Downs, BApplSci (Physio) MSc PhD

Scott Demarest, MD MSCS

Program Director &

Principal Investigator

Clinical Trials Readiness Study

Ponzio Family Endowed Chair

Neurology Research

Medical Director

Rett Clinic

Director of Research

Neurosciences Institute

Children's Hospital Colorado

Professor of Pediatrics

Neurology, Pharmacology, and Otolaryngology

University of Colorado School of Medicine

Jenny Downs, BApplSci (Physio) MSc PhD

Jenny Downs, BApplSci (Physio) MSc PhD

Jenny Downs, BApplSci (Physio) MSc PhD

Principal Investigator,

Clinical Trials Readiness Study

Associate Professor

Centre for Child Health Research

University of Western Australia

Co-Head

Child Disability

Telethon Kids Institute

Helen Leonard, MD MBChB MPH

Helen Leonard, MD MBChB MPH

Jenny Downs, BApplSci (Physio) MSc PhD

Principal Investigator,

Clinical Trials Readiness Study

Associate Professor

Centre for Child Health Research

University of Western Australia

Co-Head

Child Disability

Telethon Kids Institute

Eric Marsh, MD PhD

Helen Leonard, MD MBChB MPH

Peter Jacoby, BA (Hons) MSc

Principal Investigator,

Clinical Trials Readiness Study

Associate Professor

Neurology and Pediatrics

Perelman School of Medicine at the

University of Pennsylvania

Clinical Director

Penn Orphan Disease Center

Head

Neurogenetics Program

Children's Hospital of Philadelphia

Peter Jacoby, BA (Hons) MSc

Helen Leonard, MD MBChB MPH

Peter Jacoby, BA (Hons) MSc

Principal Investigator,

Clinical Trials Readiness Study

Associate Professor

Biostatistics

University of Western Australia

Senior Research Fellow

Telethon Kids Institute

Site Investigators and Project Leads

Heather Olson, MD

Elia Pestana-Knight, MD

Judy Weisenberg, MD

Boston Children's Hospital

Principal Investigator, Clinical Trials Readiness Study

Judy Weisenberg, MD

Elia Pestana-Knight, MD

Judy Weisenberg, MD

Washington University in St. Louis

Principal Investigator, Clinical Trials Readiness Study

Elia Pestana-Knight, MD

Elia Pestana-Knight, MD

Elia Pestana-Knight, MD

Cleveland Clinic

Principal Investigator, Clinical Trials Readiness Study

Raj Rajaraman, MD

Berhnard Suter, MD

Elia Pestana-Knight, MD

University of California Los Angeles

Principal Investigator, Clinical Trials Readiness Study

Berhnard Suter, MD

Berhnard Suter, MD

Berhnard Suter, MD

Texas Children's Hospital

Principal Investigator, Clinical Trials Readiness Study

Dana Price, MD

Berhnard Suter, MD

Berhnard Suter, MD

New York University Langone Health

Principal Investigator, Clinical Trials Readiness Study

Gina VanderVeen, MPH CCRP

Jacinta Saldaris, BSc (Hons) PhD

Jacinta Saldaris, BSc (Hons) PhD

ICCRN Project Manager

Clinical Research Services Senior Professional

University of Colorado School of Medicine

Children's Hospital Colorado

Jacinta Saldaris, BSc (Hons) PhD

Jacinta Saldaris, BSc (Hons) PhD

Jacinta Saldaris, BSc (Hons) PhD

ICCRN Program Specialist

Senior Research Officer

University of Western Australia

Telethon Kids Institute