The FOXG1 Gene Therapy is Within Reach!
We’re making history— parent-led drug development in action.
We are on track to begin patient trials in early 2026, bringing the first treatment for FOXG1 syndrome to children around the world.
What is FOXG1 Syndrome
FOXG1 syndrome is a rare neurological genetic disorder that greatly impacts brain development and typically causes epilepsy and an array of 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 1200 known people in the world diagnosed with FOXG1 syndrome. There are no treatments for FOXG1 syndrome, yet. We are here to change that.
The FOXG1 Research Foundation
Dedicated to Cure FOXG1 Syndrome
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 worldwide.
Making Treatments Possible, Together
It takes a dedicated community to advance FOXG1 treatments. Whether you’re a parent seeking answers, a donor ready to drive change, or a scientist exploring new frontiers, your role is critical in shaping the future.
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Parents & Caregivers
Learn about resources, studies, & support
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Donors & Philanthropists
See ways to support, impact, campaign, and more
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Researchers & Industry
Science, partnerships, clinical trial
FOXG1 Patient Registry and Natural History Study
FOXG1 Parents: Please register your FOXG1 Child in the official FOXG1 syndrome patient registry and help advance treatments for all patients worldwide.
The de-identified information you share in the global registry and through a Citizen Health account is the most powerful way to deepen the understanding of FOXG1 syndrome and help the entire FOXG1 community.
Newly Diagnosed?
You are not alone.
We are a worldwide team of FOXG1 parents dedicated to finding a cure and supporting you along this journey.
There is hope.
We are living in a time when diseases are being cured. There are new treatments being developed for conditions like ours and we are pioneering drug development for FOXG1 syndrome.
Shop for a Cure
Awareness is always in fashion—and every purchase helps drive progress towards a cure for FOXG1 syndrome.