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 advancing life-changing therapies for every FOXG1 child, while supporting you along this journey.

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

2. There is hope.

We're living at a very exciting time for genetic science. When we started this foundation, a treatment for FOXG1 syndrome was a dream. Today, it is becoming a reality. The FOXG1 gene therapy is advancing through patient clinical trials — the first treatment ever developed for FOXG1 syndrome.

This is a historic moment for our community, and one we have built together. We will stop at nothing to give all of our incredible children the lives they deserve.

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.

Set Up Your New Parent Zoom.

FOXG1 leadership 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. Set up your New Parent Zoom meeting with any member of the FRF team below.