We are a group of national and international research scientists and advisors who share a common passion for exploring the frontiers of knowledge and pushing the boundaries of scientific discovery. We have come together to form the Spastic Paraplegia – Centers of Excellence Research Network to strengthen our collaboration towards understanding Hereditary Spastic Paraplegia (HSP) and Primary Lateral Sclerosis (PLS). With a diverse range of expertise and a collective spirit, our team works to support therapy development, increase access to quality clinical care, and enhance research developments towards clinical trial readiness. Through our collective efforts, we aim to make a positive impact on individuals affected by HSP & PLS.

Principal Investigator

Boston Children’s Hospital: Darius Ebrahimi-Fakhari, MD, PhD

Director, Movement Disorders Program; Attending, Department of Neurology

Assistant Professor of Neurology, Harvard Medical School

Co-Investigators

University of Miami: Stephan Züchner MD, PhD

Professor for Human Genetics and Neurology

Chief Genomics Officer, Leonard M. Miller School of Medicine

University of Miami: Mario Saporta MD, PhD

Associate Professor of Clinical Neurology

Director, Muscular Dystrophy Association Care Center

Director, Charcot-Marie-Tooth Center of Excellence

Massachusetts General Hospital: Craig Blackstone, MD, PhD

Chief, Movement Disorders Division; Massachusetts General Hospital and Harvard Medical School

Texas Children’s Hospital: Daniel Calame, MD, PhD

Assistant Professor of Pediatric Neurology and Developmental Neurosciences
Baylor College of Medicine


Columbia University Irving Medical Center: Matthew Harms, MD

Associate Professor of Neurology; NewYork-Presbyterian / Columbia University Irving Medical Center

Clinical Neurophysiology, Neurology, Neuromuscular Medicine

University of Michigan: John Fink, MD

Professor in the Department of Neurology

Director of the Neurogenetic Disorders Program; University of Michigan Medical School

Scottish Rite for Children: Michelle Christie, MD

Medical Director of Neurology & Rehabilitation Medicine

Director of Neurophysiology; Scottish Rite for Children

University of Iowa: Michael Shy, MD

Director, Division of Neuromuscular Medicine, Neurology; University of Iowa Health Care

Professor of Neurology, Pediatrics, & Molecular Physiology and Biophysics; Carver College of Medicine

University of Washington: Marie Davis, MD, PhD

Board certified neurologist; UW Medicine-University of Washington Medical Center

Assistant professor in the Department of Neurology; UW School of Medicine

Cincinnati Children’s Hospital Medical Center: Donald Gilbert, MD

Pediatric Movement Disorders and Tourette Syndrome Specialist, Division of Neurology

Professor, UC Department of Pediatrics

Seattle Children’s Hospital: Dararat Mingbunjerdsuk, MD

Neurosciences Center, Neurology, Movement Disorders

Associate Professor of Neurology

Boston Children’s Hospital Team

Darius Ebrahimi-Fakhari, MD, PhD; Principal Investigator

Vicente Quiroz, MD, MSc; Clinical Research Fellow

Kathryn Yang, MD; Clinical Research Fellow

Luca Schierbaum, MD; Clinical Research Fellow

Rasha Srouji, RN, MSN, CPNP; Nurse Practitioner

Umar Zubair; Medical Student Researcher

Elicia Estrella, MS, LCGC; Senior Genetic Counselor, Neurogenetics Program

Abigal Sveden, MS, CGC (joint with RSZ-TNC Genomics Core); Computational Analyst

Amy Tam, BS; Clinical Research Coordinator

Nicole Battaglia, BS; Clinical Research Coordinator