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.

• We are running industry-level translational science across genetic therapies and drug screens.

• We created the library of FOXG1 animal models, cell lines, and patient natural history data.

• We understand the FOXG1 gene and patient symptoms at the deepest levels.

• We developed the official FOXG1 Patient Registry and digital Natural History Study.

• We are focused on FOXG1 science, FOXG1 patient data, and the FOXG1 patient and clinician community.

• We serve the FOXG1 community through resources, clinician guides, conferences, caregiver networking, advocacy, and love.

• We are a Chan Zuckerberg Initiative “Rare As One” partner

• We are committed to every FOXG1 patient in the world.

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