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

Orrin Devinsky, MD
Neurosurgeon, NYU Langone, Chief of Service, NYU Epilepsy

Robin Kleiman, Ph.D Senior Director, Biogen Research Associate, Boston Children’s Hospital

Robin Kleiman, Ph.D
Vice President, CNS Biology at Alkermes

Kiran Reddy, MD Blackstone Life Sciences, Former CEO Praxis

Kiran Reddy, MD
Blackstone Life Sciences, Former CEO Praxis

Aris Economides, PhD Vice President of Research, Regeneron Pharmaceuticals

Aris Economides, PhD
Vice President of Research, Regeneron Pharmaceuticals

Dr Scott Dindot, PhD Assistant Professor, Texas A&M College of Medicine

Dr Scott Dindot, PhD
Assistant Professor, Texas A&M College of Medicine

Hourinaz Behesti, Ph.D.
CEO, Hebbian Bio

Justin To Chief Operating Officer of BridgeBio Gene Therapy

Justin To
CEO at QED Therapeutics, a BridgeBio company

Heather Olson, MD, MS Neurologist, Boston Children's; Neurology Instructor, Harvard Medical

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

Xilma Ortiz-Gonzalez, MD, PhD
Pediatric Neurologist, CHOP, Neurology Instructor, University of Pennsylva

Gordon Fishell, PhD Scientist, Broad Institute; Professor, Harvard Medical School

Gordon Fishell, PhD
Scientist, Broad Institute; Professor, Harvard Medical School

Rodney Samaco Assistant Professor of Molecular and Human Genetics at Baylor College of Medicine

Rodney Samaco Assistant Professor of Molecular and Human Genetics at Baylor College of Medicine

Ritu Lal, PhD  Clinical Pharmacology Consultant

Ritu Lal, PhD
Clinical Pharmacology Consultant

Mark Pykett, PhD Chief Innovation Officer, PTC Therapeutics, former CEO, Agilis Biotherapeutics

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