The FOXG1 Gene Therapy is Within Reach!

We’re making history— parent-led drug development in action.

We are on track to begin patient clinical trials in 2026, bringing the first treatment for FOXG1 syndrome to children around the world.

Help Us Get There

Learn about FOXG1 Gene Therapy

A young girl with light brown hair and light skin wearing a white head wrap and a purple jacket, standing outdoors next to a gray vehicle.

Smiling young boy with curly hair in a green t-shirt sitting on a wheelchair, outdoors in front of a brick wall.

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A smiling girl in glasses sitting in a motorized wheelchair indoors, with toys and a person standing nearby.

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A young child with blue eyes, wearing red glasses, a gray cap decorated with sports and animal patterns, and a white bandana with red and black designs, sitting in a backpack carrier outdoors among trees.

A baby with blue eyes and light brown hair, wearing a white outfit with a bunny embroidery, lying in a decorated crib with pink and white patterned bedding.

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Young boy with short dark hair, wearing a gray shirt and a patterned bib, sitting in a classroom or similar setting.

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Close-up of a boy with short dark hair, smiling with his mouth open, holding his hand near his chin, outdoors near water and brick buildings.

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A young boy sitting in a chair, wearing blue glasses, with a pacifier in his mouth, and leaning on a turquoise foam mat.

A young girl with a big smile, showing her teeth, with dark hair tied back and wearing a floral shirt.

A smiling young boy with glasses and missing front teeth.

A young boy with blonde hair and blue goggles sitting outdoors on a blanket, wearing a gray hoodie and blue pants, holding a teething toy in one hand and touching his mouth with the other.

A young child with blonde hair and big brown eyes smiling, wearing a red and white striped shirt, sitting on a gray chair with a plush toy resting on their shoulder.

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What is FOXG1 Syndrome

Illustration of a DNA double helix with a break and red arrows indicating a mutation or damage.

A young red-haired boy who has FOXG1 syndrome with blue eyes sitting on green grass, looking up and smiling.

FOXG1 syndrome is a rare neurological genetic disorder that greatly impacts early brain development and typically causes an array of disabilities and medical complexities, including epilepsy. Many 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 1400 known people in the world diagnosed with FOXG1 syndrome. There are no treatments for FOXG1 syndrome, yet. We are here to change that.

About FOXG1 Syndrome

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.

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About the Campaign

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.

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

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FOXG1 Patient Registry and Natural History Study

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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.

Register Your FOXG1 Child

Create Your Citizen Account

Close-up of a baby with FOXG1 syndrome lying on a pillow, looking up with wide eyes, in a clinical setting.

Newly Diagnosed?

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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.

Start your Journey with Us