When Dongjun Shin first stepped into the FOXG1 Research Center, he wasn’t sure if a PhD was the right path for him. Now, he’s deep into a thesis that could help transform how we understand and treat FOXG1 syndrome — and he wouldn’t have it any other way.

“When the road is hard, the people who walk beside you matter most.”

When a family you love is handed a rare disease diagnosis — like FOXG1 syndrome — you want to help. You might drop off a casserole, send a heartfelt text, or offer to babysit. And then… life goes on. But for the family? Life doesn’t go back. It becomes something entirely new.

Meet Dr. Lian Cai: Using Stem Cells to Unlock Clues About FOXG1. Dr. Lian Cai came to the U.S. from halfway across the world — originally from China, with advanced training in South Korea — to join the Lee Lab at the University at Buffalo, home of the FOXG1 Research Center.

When a child is diagnosed with FOXG1 syndrome, families often find themselves navigating an unfamiliar and challenging journey. While medical research and therapy options continue to advance, one of the most powerful resources available to families is a strong, supportive community. Finding others who understand your experiences can provide emotional support, practical advice, and a sense of belonging.

FOXG1 Research Center is proud to showcase Amber Partisano, a FOXG1 mom and author!

5 Tips for Navigating Life After a FOXG1 Diagnosis

When your child is diagnosed with FOXG1 syndrome, it can feel overwhelming. You’re stepping into a world filled with medical jargon, complex decisions, and uncharted territory. While every family’s journey is unique, here are five practical tips to help you navigate this new chapter with confidence, care, and the support of the FOXG1 community.

At the FOXG1 Research Center, every team member brings a unique story and passion to their work. This month, we’re excited to introduce Sophia (Xuefang), a research technician whose journey to the lab reflects resilience, curiosity, and an unshakable commitment to making a difference.

Every November, we come together as a community to shine a light on FOXG1 syndrome—a rare genetic disorder that profoundly affects the lives of countless families around the world. FOXG1 Awareness Month is a time to increase understanding, spread compassion, and rally support for the research needed to bring hope and progress.

Our latest research at the FOXG1 Research Center shows promising results using gene therapy to restore brain structures affected by FOXG1 syndrome. This breakthrough brings new hope for future treatments targeting the root cause of the disorder. Stay tuned for more updates!

We are thrilled to announce we are hosting an opening ceremony on Tuesday, September 24, 2024.