Newly Diagnosed

Newly Diagnosed?

A family of three, a man, a woman, and a young girl, standing outdoors in front of green bushes. The man is holding the girl, who is looking at her mother. The woman appears to be upset or crying.
A young boy and a woman are smiling and laughing together. The boy is wearing pajamas with animal prints, and the woman is lying on a bed with pillows in the background.

Two things we want you to know...

1. You are not alone.

We are a worldwide team of FOXG1 parents dedicated to finding a cure and supporting you along this journey.

We have all been where you are now and we understand all the emotions you are experiencing. You have a FOXG1 family to support you.

2. 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 at the forefront of the research for FOXG1 syndrome.

We will stop at nothing to give all of our incredible children the life they deserve.

FOXG1 Leadership wants to meet you.

New (and existing) FOXG1 parents, we would love to meet you virtually to learn more about you and your family and share everything the FOXG1 Research Foundation is working on for all of our children.

Image of Nicole Johnson, Co-founder of the FOXG1 Research Foundation, with long, wavy brown hair and a bright smile, wearing a red top, in an indoor setting.
Close-up portrait of a bald man smiling outdoors, wearing a light blue button-up shirt with a blurred green background.

Co-founder, Executive Director
Mom to Josie

New York

A smiling woman with long dark hair wearing a purple textured sweater and jewelry, standing indoors with blurred background lighting.

CFO
Dad to Crosby

California

A woman with wavy brown hair and earrings, smiling slightly, wearing a colorful, striped top, standing against a plain light background.

Co-founder, CEO
Mom to Amara

California

International Liaison
Mom to Diego

Chile
Spanish Speaking

“Ask Elli”

Do you have questions about your FOXG1 child’s genetics report? Ask Elli.

Close-up image of Elli Brimble with the FOXG1 Research Foundation with short dark hair and blue eyes smiling against a brick wall background.

Chief Clinical Data Officer

What’s Next?

  • The first and most important thing for a new FOXG1 parent to do is to register your child as a FOXG1 patient in the official FOXG1 Syndrome Patient Registry. The Registry is the official source of data of FOXG1 patients worldwide and the most important page on our website where both parents and clinicians can come to help advance treatments for FOXG1 syndrome. 

    Register Here

  • Use your child’s health data (de-identified) to improve care and drive groundbreaking treatments with the FOXG1 Natural History Study by Citizen Health

    Create Your Account

  • Sign up to receive important updates and helpful resources.

    Sign Up Here

  • Join this special private Facebook Group for FOXG1 parents and caregivers to safely and openly discuss matters related to FOXG1 research, rare disease parenting, resources, and just life as a FOXG1 parent. 

    Connect Here

  • You can create a personalized Fundraising team for your FOXG1 child and help fund the incredible scientists who are working on therapies for FOXG1 syndrome.

  • If you’d ever like to join our parent-led team, we’d love to have you. See our ‘Get Involved’ page for some of the many ways you can join the FOXG1 Research Foundation’s mission to help every person in the world with FOXG1 syndrome live a healthier and easier life, while supporting and advocating for families along the way.