What to do when your child has a FOXG1 diagnosis?

Newly Diagnosed?

Two things we want

you to know...

 

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.

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.

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.

Co-founder, Executive Director
Mom to Josie

New York

CFO
Dad to Crosby

California

Co-founder, CEO
Mom to Amara

California

International Liaison
Mom to Diego

Chile
Spanish Speaking

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REGISTER YOUR FOXG1 CHILD IN THE PATIENT REGISTRY

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. 

CREATE YOUR FOXG1 CITIZEN HEALTH ACCOUNT

Use your health data to improve care and drive groundbreaking treatments with the FOXG1 Natural History Study by Citizen Health.

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GET OUR NEWS!

Sign up for our mailing list especially for parents and caregivers to learn everything the FOXG1 Research Foundation is working on around the world. Receive important updates and helpful resources for FOXG1 caretakers and family members.

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CONNECT WITH OTHER FOXG1 PARENTS

Join this special private group on Facebook 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. 

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FOLLOW US ON SOCIAL MEDIA

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CREATE YOUR OWN FUNDRAISING TEAM

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.

GET INVOLVED

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.