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.
FOXG1 Parents Support Webinar: “Tell Us Abey” Communications System
The FOXG1 Parents Support Team introduces Josh Weitzman, co-creator of the "Tell Us Abey" communications system that he and his wife Michelle developed for their son Abraham “Abey,” who has FOXG1 syndrome. Witnessing Abey's ability to communicate with this tool has given the FOXG1 community a new outlook on our children's cognitive abilities. Abey is a student at Columbia University and a skilled creative writer. In this webinar, Josh shares more about Abey, their FOXG1 journey, and explains how "Tell Us Abey" works.
San Francisco Business Times: Unlikely Drug Hunters: How two mothers are finding hope in searching for their children’s cures
SF Business Times: Kimberly Nye and Nasha Fitter both founded organizations to seek cures for afflictions suffered by their children. Nasha Fitter didn’t have time. There had to be a better, faster way, she thought — not just for her daughter, but for other people with rare diseases. Fitter tapped her tech and entrepreneurial background to create a nonprofit, the FOXG1 Research Foundation.
Global Genes Rare Leader: FOXG1 Research Foundation Co-Founder & Executive Director
Global Genes features FOXG1 Research Foundation Co-founder and Executive Director, Nicole Johnson as a rare Leader. Learn about the FOXG1 organization’s strategy, mission, guiding principles, Nicole’s management philosophy, and more.
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.
Dallas Morning News: Where is Former American Airline CEO Tom Horton? Raising Awareness for a Rare Genetic Condition.
Horton jumped into the campaign to raise awareness for the rare FOXG1 syndrome after his infant granddaughter was diagnosed in 2020.
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
January Newsletter: Big Things in 2019
Looking Back. Moving Ahead.
Wow! 2018 was an incredible first year for the FOXG1 Research Foundation! We cannot thank our supporters, partners, and donors enough for helping to make 2018 an enormously successful year!
2018 Key accomplishments:
• Raised $1.3 Million for research
• Assembled a Scientific Advisory Board consisting of 16 of the world's leaders in
their fields.
• Funded six esteemed scientists' projects along our Path to a Cure in the USA,
UK, and Italy
• Launched the most comprehensive study into FOXG1 to-date,
with eight mouse models of all known FOXG1 categories.
• Developed a global FOXG1 Syndrome Patient Registry
• Developed an iPSC line Patient Biobank
For Yuna: OHSU Scientist Unveils Origins Of Daughter’s Rare Condition: Study Findings Could Lead To New Treatment Options For FOXG1 Syndrome
For more than 20 years, Soo and Jae W. Lee have studied the specialized functions of transcription factors including FOX proteins, a family of 40-plus genes integral to the lifetime development and function of such organs as the brain and heart.
WFAN "Public Affairs" Discussion with FOXG1 Research Co-Founder Nicole Zeitzer Johnson
WFAN NY Sports Radio “Public Affairs” host Bob Salter talks to the co-founder of the FOXG1 Research Foundation, Nicole Johnson, about the extraordinary experience of learning her daughter was born with a rare genetic neurological disorder called FOXG1 syndrome - without being carriers - to starting a research foundation to find a cure. Plus how CBD oil has made a tremendous impact in helping control seizures.
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.