The FOXG1 Research Foundation (FRF) is the parent-led global organization driving the research to cure FOXG1 syndrome and related neurological disorders while supporting and advocating for patients and families.
Science * Patients * Community *
What is FOXG1 Syndrome?
FOXG1 syndrome is a rare neurological genetic disorder that greatly impacts brain development and typically causes epilepsy and physical and cognitive disabilities. Most children with FOXG1 syndrome cannot walk or talk or take care of their basic needs. Mutations to the FOXG1 gene are mostly non-inherited (de-novo). There are currently about 1000 known people in the world diagnosed with FOXG1 syndrome. There are no treatments for FOXG1 syndrome, yet. We are here to change that.
FOXG1 is a critical transcription factor gene that is linked to many related brain disorders and scientists believe that FOXG1 holds the key to unlocking brain disorders affecting millions of people, including autism, Alzheimer's, schizophrenia, epilepsy, brain cancers, and more.
Our Advisory Board
Neil Kumar, Ph.D.
CEO and co-founder of BridgeBio Pharma
Yael Weiss, M.D, Ph.D.
CEO of Mahzi Therapeutics
Dr. Karen E. Malone, PhD
Director at Leiden Analytics
Floortje van Nooten, PhD
Market Access & Commercialization Expert
Orrin Devinsky, MD
Neurosurgeon, NYU Langone, Chief of Service, NYU Epilepsy
Robin Kleiman, Ph.D
Vice President, CNS Biology at Alkermes
Kiran Reddy, MD
Blackstone Life Sciences, Former CEO Praxis
Aris Economides, PhD
Vice President of Research, Regeneron Pharmaceuticals
Dr Scott Dindot, PhD
Assistant Professor, Texas A&M College of Medicine
Hourinaz Behesti, Ph.D.
CEO, Hebbian Bio
Justin To
CEO at QED Therapeutics, a BridgeBio company
Heather Olson, MD, MS
Neurologist, Boston Children's; Neurology Instructor, Harvard Medical
Xilma Ortiz-Gonzalez, MD, PhD
Pediatric Neurologist, CHOP, Neurology Instructor, University of Pennsylva
Gordon Fishell, PhD
Scientist, Broad Institute; Professor, Harvard Medical School
Rodney Samaco Assistant Professor of Molecular and Human Genetics at Baylor College of Medicine
Ritu Lal, PhD
Clinical Pharmacology Consultant
Mark Pykett, PhD
Chief Innovation Officer, PTC Therapeutics, former CEO, Agilis Biotherapeutics
Dr Nadia Bahi-Buisson, MD, PhD
Pediatric Neurology, Necker Enfants Malades University Hospital, Paris
Abraham Weitzman
FOXG1 Syndrome Representative, Columbia University Student