Leading the worldwide fight to treat and cure
Tay-Sachs, Canavan, GM1 and Sandhoff diseases

Scientific Advisory Committee

The Scientific Advisory Committee (SAC) is comprised of world-leading experts in lysosomal and leukodystrophy disease research and clinical care.  Their fields of expertise include neurology, genetics, biomedical research, laboratory medicine and genetic counseling.

The SAC works with NTSAD to:

  • Provide updates on new developments in research, clinical care and genetic testing
  • Evaluate and recommend grants for the Research Initiative program
  • Offer clinical expertise to NTSAD family services director and families
  • Build relationships between NTSAD and scientific organizations, federal agencies, and other scientists and physicians
  • Provide oversight of the International Tay-Sachs Quality Control Testing program


Gustavo Maegawa, MD, PhD
Johns Hopkins University
Baltimore, MD

Marvin Natowicz, MD, PhD
Cleveland Clinic Foundation
Cleveland, OH

Swati Sathe, MD, MS
St. Joseph's Regional Medical Center
Clifton, NJ

Thomas N. Seyfried, PhD
Boston College
Chestnut Hill, MA

Barbara Shapiro, MD, PhD
University Hospitals of Cleveland
Cleveland, OH

Evan Y. Snyder, MD, PhD
Sanford-Burnham Medical Research Institute
La Jolla, CA

Cynthia J. Tifft, MD, PhD, FACMG
National Human Genome Research Institute
National Institutes of Health
Bethesda, MD

Steven U. Walkley, DVM, PhD
Albert Einstein College of Medicine
Bronx, NY

Michael S. Watson, PhD, FACMG
American College of Medical Genetics
Bethesda, MD

SAC Chair

Frances Platt, PhD
University of Oxford
Oxford, England

Jodi Hoffman, MD (Vice Chair)
Tufts Medical Center
Boston, MA

SAC Members

Miriam Blitzer, PhD 
University of Maryland School of Medicine
Baltimore, MD

Robert Desnick, PhD, MD
Mt. Sinai School of Medicine
New York, NY

Florian Eichler, MD
Massachusetts General Hospital
Boston, MA

Mark Haskins, VMD, MS, PhD
University of Pennsylvania
School of Veterinary Medicine
Philadelphia, PA

Michael M. Kaback, MD, FACMG
San Diego, CA

Edwin H. Kolodny, MD
New York University Medical Center
New York, NY