Our Team
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 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 Miami: Stephan Züchner MD, PhD
Professor for Human Genetics and Neurology
Chief Genomics Officer, Leonard M. Miller School of Medicine
Scottish Rite for Children: Michelle Christie, MD
Medical Director of Neurology & Rehabilitation Medicine
Director of Neurophysiology; Scottish Rite for Children
Massachusetts General Hospital: Craig Blackstone, MD, PhD
Chief, Movement Disorders Division; Massachusetts General Hospital and Harvard Medical School
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
Texas Children’s Hospital: Daniel Calame, MD, PhD
Assistant Professor of Pediatric Neurology and Developmental Neurosciences
Baylor College of Medicine
University of Michigan: John Fink, MD
Professor in the Department of Neurology
Director of the Neurogenetic Disorders Program; University of Michigan Medical School
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
St. Jude Children’s Research Hospital: Richard Finkel, MD
Member, St. Jude Faculty
George J. Pedersen Endowed Chair in Neurotherapeutic
Director, Center for Experimental Neurotherapeutics
St. Jude Children’s Research Hospital: Joshua Burns, PhD
Director, Disability Prevention Program
Director, 3D Clinical Gait Analysis Laboratory
Jeweler’s Charity Fund Endowed Chair of Cancer Survivorship
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
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
Nicole Battaglia, BS; Clinical Research Coordinator
Josh Rong, BS; Clinical Research Coordinator
Amy Tam, BS; Clinical Research Coordinator