Meet our Investigators
Given the size of the Global Leukodystrophy Initiative (GLIA) and its collaborative stakeholders, covering a group of related yet distinct conditions, a strength of our application is that we have harnessed the commitment of multiple investigators to ensure that the GLIA-CTN can operate seamlessly at a national level. Each of these investigators brings extensive and complementary experience in different areas of expertise. They have each been tasked with managing various aspects of the program, and they will work closely with each other - as well as our external stakeholders - to ensure the success of the GLIA-CTN.
Laura A. Adang, MD, PhD
Children's Hospital of Philadelphia
Philadelphia, PA
Expertise: Pediatric neurology, leukodystrophy, metachromatic leukodystrophy (MLD), multiple sulfatase deficiency (MSD), x-linked adrenoleukodystrophy (ALD), Aicardi-Goutières syndrome (AGS)
Peter Barker, PhD
Johns Hopkins University
Baltimore, MD
Expertise: Magnetic resonance imaging, magnetic resonance spectroscopy, quantitative imaging methods
Tara Bamat, MD
Children's Hospital of Philadelphia
Philadelphia, PA
Expertise: Palliative care, patient-physician communication, trauma responsive care, vicarious trauma, physician well-being
Joshua L. Bonkowsky, MD, PhD
University of Utah Health
Salt Lake City, UT
Expertise: Pediatric neurology, leukodystrophy, x-linked adrenoleukodystrophy (ALD), vanishing white matter disease (VWMD)
Daniel Calame, MD, PhD
Baylor College of Medicine
Houston, TX
Expertise: Pediatric neurology, leukodystrophy, hereditary spastic paraplegia (HSP), cerebral palsy (CP), clinical genetics
Lisa T. Emrick, MD
Texas Children's Hospital
Houston, TX
Expertise: Pediatric neurology, leukodystrophy, neurogenetics, neurometabolics, mitochondrial encephalomyopathy, lacticacidosis, strokelike episodes (MELAS)
Florian Eichler, MD
Massachusetts General Hospital
Boston, MA
Expertise: Pediatric neurology, leukodystrophy, x-linked adrenoleukodystrophy (ALD), adrenomyeloneuropathy (AMN), Canavan disease (CD), CSF1R-related leukoencephalopathy (ALSP)
S. Ali Fatemi, MD, MBA
Kennedy Krieger Institute
Baltimore, MD
Expertise: Pediatric neurology, leukodystrophy, x-linked adrenoleukodystrophy (ALD), adrenomyeloneuropathy (AMN), leukoencephalopathy with brainstem and spinal cord involvement and lactate elevation (LBSL)
Kristen Fisher, DO
Baylor College of Medicine
Houston, TX
Expertise: Pediatric neurology, leukodystrophy, neuroinflammatory disorders, Aicardi-Goutières syndrome (AGS)
Jamie L. Fraser, MD, PhD
Children’s National Medical Center
Washington, DC
Expertise: Pediatric neurology, leukodystrophy, biochemical genetics, medical genetics, leukoencephalopathy with calcifications and cysts (LCC)
Francesco Gavazzi, MD, PhD
Children's Hospital of Philadelphia
Philadelphia, PA
Expertise: Pediatric neurology, leukodystrophy, outcome measure design and validation, metachromatic leukodystrophy (MLD), TUBB4A-related leukodystrophy, pol III-related leukodystrophy, Pelizaeus-Merzbacher disease (PMD), multiple sulfatase deficiency (MSD), Aicardi-Goutières syndrome (AGS), WDR45-related disorders
Michael Gelb, PhD
University of Washington
Seattle, WA
Expertise: Clinical enzymology, phospholipases, protein prenylation, anti-parasite therapeutics, mass spectrometry, newborn screening assay development
Lindsey George, MD
Children's Hospital of Philadelphia
Philadelphia, PA
Expertise: Hemostasis and thrombosis disorders, hemophilia gene therapy, hemophilia
Allan Glanzman, DPT
Children's Hospital of Philadelphia
Philadelphia, PA
Expertise: Neuromuscular disorders, rehabilitation
Robert Grundmeier, MD
Children's Hospital of Philadelphia
Philadelphia, PA
Expertise: General pediatrics, clinical informatics
Jennifer Hwang, MD
Children's Hospital of Philadelphia
Philadelphia, PA
Expertise: Palliative care, patient-physician communication, medical education
Meng Gu, PhD
Stanford University
Stanford, CA
Expertise: Magnetic resonance imaging, magnetic resonance spectroscopy, metabolic imaging
Stephanie Keller, MD
Emory University
Atlanta, GA
Expertise: Pediatric neurology, leukodystrophy
Eric Macklin, PhD
Massachusetts General Hospital
Boston, MA
Expertise: Neurodegenerative and neurodevelopmental diseases, clinical trial design, Parkinson's disease, amyotrophic lateral sclerosis (ALS)
Amanda Nagy, MD
Massachusetts General Hospital
Boston, MA
Expertise: Pediatric neurology, leukodystrophy, Canavan disease (CD)
Michelle Rengarajan, MD, PhD
Massachusetts General Hospital
Boston, MA
Expertise: Autoimmune endocrine disease, epithelial-immune interactions, human immunology, immune-related adverse events, quantitative cell biology, single cell genomics, systems immunology
Justine Shults, PhD
Children's Hospital of Philadelphia
Philadelphia, PA
Expertise: Biostatistics, clinical epidemiology
Amena Smith Fine, MD, PhD
Kennedy Krieger Institute
Baltimore, MD
Expertise: Pediatric neurology, leukodystrophy, x-linked adrenoleukodystrophy (ALD), adrenomyeloneuropathy (AMN), leukoencephalopathy with brainstem and spinal cord involvement and lactate elevation (LBSL)
Daniel Spielman, PhD
Stanford University
Stanford, CA
Expertise: Magnetic resonance imaging, magnetic resonance spectroscopy, quantitative imaging methods
Isha Srivastava, MD, PhD
Stanford University
Stanford, CA
Expertise: Pediatric neurology, leukodystrophy, x-linked adrenoleukodystrophy (ALD), cerebral palsy (CP)
Bela Turk, MD
Kennedy Krieger Institute
Baltimore, MD
Expertise: Pediatric neurology, leukodystrophy, outcome measure design and validation, x-linked adrenoleukodystrophy (ALD), adrenomyeloneuropathy (AMN), leukoencephalopathy with brainstem and spinal cord involvement and lactate elevation (LBSL)
Adeline L. Vanderver, MD
Children's Hospital of Philadelphia
Philadelphia, PA
Expertise: Pediatric neurology, leukodystrophy, metachromatic leukodystrophy (MLD), TUBB4A-related Leukodystrophy, pol III-related leukodystrophy, Pelizaeus-Merzbacher disease (PMD), Aicardi-Goutières syndrome (AGS), adrenoleukodystrophy (ALD), undiagnosed leukodystrophies, next generation sequencing
Keith P. Van Haren, MD
Stanford Children's Health
Palo Alto, CA
Expertise: Pediatric neurology, leukodystrophy, adrenoleukodystrophy (ALD), acute flaccid myelitis (AFM)
Amy T. Waldman, MD, MSCE
Children's Hospital of Philadelphia
Philadelphia, PA
Expertise: Pediatric neurology, leukodystrophy, Alexander disease, Krabbe disease (KD), Canavan disease (CD), adrenoleukodystrophy (ALD), vanishing white matter disease (VWMD), multiple sclerosis (MS)