Meet the Leadership

  • Liz Spitzer, PhD

    FOUNDER, COO

  • A woman with black glasses wearing a baseball hat holds a delighted young girl in a pink shirt

    Brettne Frewin

    FOUNDER, CFO

  • Lisa Costen

    FOUNDER & PRESIDENT

Our Scientific Advisory Board

  • Erika Holzbaur, PhD

    University of Pennsylvania

  • Morgan DeSantis, PhD

    University of Michigan

  • Hormos Salimi Dafsari, MD

    Pediatric Neurology and Center for Rare Diseases at University Hospital Cologne and Max-Planck-Institute for Biology of Aging

  • Steven Markus, PhD

    Colorado State University

  • Christelle Moufawad El Achkar, MD

    Epilepsy Center, Department of Neurology, Boston Children’s Hospital

    Instructor of Neurology, Harvard Medical School

  • Majid Hafezparast, PhD

    University of Sussex, Brighton, UK

  • Rozalia Valentine, MS, CGC

    Epilepsy Genetics Program and Neurogenetics Program, Boston Children’s Hospital

  • Gyula Ascadi, MD

    Pediatric Neurology, Connecticut Children’s Medical Center Research Institute

Our Partners

The Orphan Disease Center's Jumpstart Program