The FOXG1 gene therapy has been cleared to begin clinical trials, marking a historic milestone for the FOXG1 community. Learn how years of research helped bring this potential treatment from the lab toward patients.

Every year on February 28, the global community comes together to observe Rare Disease Day - a movement dedicated to raising awareness and advocating for equity for the 300 million people worldwide living with a rare disease.

FOXG1 syndrome is a rare neurodevelopmental disorder caused by a change (pathogenic variant) in the FOXG1 gene. FOXG1 is important for early brain development, especially the development of the forebrain and areas involved in cognition, movement, and sensory processing.

For Taeyeon Kim, science was always something she was drawn to. Through hands-on experience, growing responsibility, and supportive mentorship at the FOXG1 Research Center, Taeyeon found clarity. Today, with encouragement from Jae Lee, Taeyeon is actively interviewing for PhD programs and applying to continue her education in Biological Sciences, with a clear commitment to staying in research and growing within the field.

Caregiving for a child with FOXG1 often means living in a constant state of alertness. This resource was created to gently remind parents and caregivers that their health matters too, and to share supportive ways to care for themselves along the way.

Varsha’s path to FOXG1 research began with curiosity. The kind that starts small, grows quietly, and eventually becomes impossible to ignore.

The holiday season brings together friends, cousins, grandparents, and chosen family. It is a time filled with traditions, celebrations, and the kind of memories families look forward to all year. For FOXG1 families, these gatherings can also come with unique challenges. Many children with FOXG1 syndrome have mobility differences, sensory sensitivities, feeding needs, or medical equipment that make typical holiday environments feel overwhelming.

Meet Meet Shin Jeon, PhD- A scientist whose dedication helped shape the FOXG1 Research Center from the very beginning!

November is FOXG1 Awareness Month, a time when families, researchers, and advocates around the world come together to shine a light on a rare condition that connects us all. But true awareness is not defined by a single month.

If you’ve ever wondered what to say or how to show up for a FOXG1 family, here’s some help!

Today, we’re sharing the story of Seon-Ung Hwang, PhD, a postdoctoral researcher whose

journey from South Korea to Buffalo - and from embryology to patient-derived stem cells -

reflects both the challenges and the quiet hope behind FOXG1 science.

When your child is diagnosed with a rare condition like FOXG1 syndrome, one of the hardest parts can be figuring out how to explain it to others. Friends, relatives, even well-meaning strangers may ask questions you weren’t prepared to answer.

Meet Soumya!
Her journey into neuroscience led her all the way to the FOXG1 Research Center—where the science feels deeply personal.

As she shared: “Meeting FOXG1 families reminded me that every step forward in the lab is a step toward hope for real children and their families.”

Back-to-school season always brings a mix of emotions for parents—excitement, nerves, and a little bit of exhaustion. For FOXG1 families, that mix is often amplified. New teachers, new classrooms, new routines, and new challenges can feel overwhelming when your child requires extra care and accommodations.

Read about Yenyen’s inspiring milestone living with FOXG1 syndrome and how therapy, love, and community support helped her progress. Learn more and connect with FOXG1 families.