foxg1 research

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University at Buffalo launches center to find treatments for FOXG1 syndrome

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University at Buffalo launches center to find treatments for FOXG1 syndrome

University at Buffalo announces the launch of the FOXG1 Research Center to study FOXG1 syndrome’s impact on brain development and translate research to treatments for FOXG1 syndrome. The FOXG1 Research Center will be led by leading experts Soo-Kyung and Jae Lee, whose own daughter has FOXG1 syndrome.

“This center will make UB the home of the world’s premier research center devoted to the studies of FOXG1 syndrome, as well as provide our campus with a new neurodevelopmental biology training program and numerous research funding opportunities,” says Soo-Kyung Lee, PhD, Empire Innovation Professor and Om P. Bahl Endowed Professor in the UB Department of Biological Sciences, who will serve as the FRC’s inaugural director as well as the Chief Scientific Officer of the FOXG1 Research Foundation.

2023 Impact Report

2023 marked six years of the FOXG1 Research Foundation. We are a parent-driven, global foundation with the mission to help improve the lives of every person affected by FOXG1 syndrome worldwide. We are known in the industry as innovators as we  focus on three equally critical areas: FOXG1 science, FOXG1 patient data, and FOXG1 patients and community. From advancing our gene therapy program to building our own bioinformatics platform, to helping guide parents through the rare disease medical caregiver journey, this year has been a year of upward progress in all three areas. Here are the FOXG1 Research Foundation highlights from 2023 and goals for 2024.


CareTalk Podcast: Why Rare Disease Research is SO Important

In the CareTalk episode, “Why Rare Disease Research is So Important” Co-host, David Williams is joined by Nasha Fitter, CEO of FOXG1 Research Foundation, which is dedicated to finding a cure for FOXG1 Syndrome and Vice President of RWE and Ciitizen Platform at Invitae, to shed light on the importance of rare disease research, the challenges it faces, and the promising developments in this field.

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Dr. Soo-Kyung Lee, FOXG1 Research Foundation Scientist, Earns Grant from Simon Foundation Autism Research Initiative (SFARI) for Genomics of ASD: Pathways to Genetic Therapies

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Dr. Soo-Kyung Lee, FOXG1 Research Foundation Chief Scientific Officer, named awardee of Simon Foundation Autism Research Initiative (SFARI) grant for Genomics of ASD: Pathways to Genetic Therapies

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The Johnson Family - Changing the World Right Here in Port Washington

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The Johnson Family - Changing the World Right Here in Port Washington

FOXG1 Research Foundation co-founder and Executive Director shared her story with her hometown local magazine called Port Washington Living. This feature article celebrates the Johnson family and Nicole’s work to find a cure for FOXG1 syndrome, while helping FOXG1 families around the world, including helping the FOXG1 family in the Ukraine to safety.

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Help FOXG1 Ukrainian Family Rebuild!

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Help FOXG1 Ukrainian Family Rebuild!

The FOXG1 Research Community has helped get a FOXG1 family safely out of the warn-torn Ukraine! Now, they have to rebuild thier lives. Eva is a 3-ear-old child with the severe rare disease called FOXG1 syndrome. She suffers from seizures and is disabled. They are on thier way to safely, but they lost everything. This is how you can help. Thank you!

COMBINED Brain Interviews FOXG1 Research Foundation Co-Founder, Nicole Johnson

For FOXG1 Awareness Month, Terry Jo Bichell, the Director of COMBINED Brain spoke to Nicole Johnson about her FOXG1 journey. Nicole discusses her daughter Josie, her family, and how the FOXG1 Research Foundation was created. Learn the FRF's research strategy and more.

One Rare Disease Mom and Patient Organization Leader to Another…

Terry Jo Bichelle is the founder of COMBINED Brain, The Consortium for Outcome Measures and Biomarkers for Neurodevelopmental Disorders that is devoted to speeding the path to clinical treatments for people with severe rare genetic non-verbal neurodevelopmental disorders by pooling efforts, studies and data. Nicole Johnson is on the board of COMBINED Brian and is the co-founder and Executive Director of the FOXG1 Research Foundation.

Terry Jo speaks to Nicole about her journey as a FOXG1 mom, from the early days of searching for her daughter Josie’s diagnosis to starting the FOXG1 Research Foundation. As Terry Jo says the FOXG1 Research Foundation has “really power packed” the work in four years to drive the science towards therapeutics for all individuals with FOXG1 syndrome.

A Daughter's Rare Disease Brings Mother-Father Researchers to Buffalo for Answers

A Daughter's Rare Disease Brings Mother-Father Researchers to Buffalo for Answers

Soo-Kyung Lee, Empire Innovation Professor of Biology at the University at Buffalo, has been driven to focus greater attention on FOXG1 syndrome since her daughter, Yuna, was diagnosed with the neurological condition almost nine years ago.

Douglas Levere/University at Buffalo

November 2020 Research Update : Creyon Bio Takes on FOXG1 for ASOs!

November 2020 FOXG1 Research Foundation Research Update: Two Biotech companies are investing in FOXG1 syndrome for gene therapy and ASO therapy. FOXG1 Research is moving into screening drugs and testing potential therapies with a newly assembled consortium of esteemed scientists.

Infinitesimal Odds: A Scientist Finds Her Child’s Rare Illness Stems From the Gene She Studies - NYT Video

Infinitesimal Odds: A Scientist Finds Her Child’s Rare Illness Stems From the Gene She Studies - NYT Video

By the time her mother received the doctor’s email, Yuna Lee was already 2 years old, a child with a frightening medical mystery. Plagued with body-rattling seizures and inconsolable crying, she could not speak, walk or stand.

“Why is she suffering so much?” her mother, Soo-Kyung Lee, anguished. Brain scans, genetic tests and neurological exams yielded no answers. But when an email popped up suggesting that Yuna might have a mutation on a gene called FOXG1, Soo-Kyung froze.