FOXG1 syndrome

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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.

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FOXG1 Parents Support Webinar: “Tell Us Abey” Communications System

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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.

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San Francisco Business Times: Unlikely Drug Hunters: How two mothers are finding hope in searching for their children’s cures

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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.

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Global Genes Rare Leader: FOXG1 Research Foundation Co-Founder & Executive Director

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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.

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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.

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

January Newsletter: Big Things in 2019

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

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.