science

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New publication shows groundbreaking results in FOXG1 AAV9 gene therapy studies; rescuing structural brain abnormalities

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Groundbreaking Study Shows Promise in AAV9 Gene Therapy for FOXG1 Syndrome; Rescue of Brain Structure Abnormalities and Deficits.

[Buffalo, New York June 10, 2024] – A landmark study led by Dr. Soo-Kyung Lee, Chief Scientific Officer at the FOXG1 Research Foundation and Empire Innovation Professor and Om P. Bahl Endowed Professor in the Department of Biological Sciences at University at Buffalo, and Dr. Jae Lee, Professor in the Department of Biological Sciences at University at Buffalo, in collaboration with Dr. Kathrin Meyer (responsible for the SMA gene therapy), has been published in Molecular Therapy Methods & Clinical Development.

FRF Appoints Chief Drug Development Officer, Dr. Gai Ayalon

The FOXG1 Research Foundation announces the appointment of Dr. Gai Ayalon as the Chief Drug Development Officer..

Dr. Ayalon is a distinguished neuroscientist and drug developer, who over many years led teams and spearheaded drug development programs for neurological diseases including rare neurodevelopmental disorders, spanning the discovery, translation and clinical phases. He joins our foundation at a critical and pivotal juncture as we enter Phase Four on our Path to a Cure, taking programs through safety studies and clinical trials. 

ONCE UPON A GENE - EPISODE 163 - How Far We've Come - with Nicole Johnson

Effie Parks talks to the co-founder of the FOXG1 Research Foundation, Nicole Johnson in this episode of Once Upon a Gene. Nicole shares the FOXG1 Research Foundation journey marking five years, and shares tips on how to throw a successful conference for scientists, clinicians and parents from all over the world

The most personalized medicine: Studying your own child’s rare condition

Article from Spectrum News, the leading site for autism research news. Excerpt:Attracting parents who are also scientists to the cause only turbocharges those efforts. Nasha Fitter, a cofounder of the FOXG1 Research Foundation, a parent-led foundation for research on an autism-linked condition called FOXG1syndrome, could hardly believe it when she stumbled on a 2017 Facebook post by FOXG1 parent Soo-Kyung Lee about a grant she and her husband, Jae Lee, both respected neuroscientists, had secured. “Hold up, you guys are parents and you’re scientists?” she remembers thinking, even before she knew of their expertise and reputation for rigor. The Lees now lead the FOXG1 Center of Excellence at the University at Buffalo in New York State and receive considerable funding from the foundation. FOXG1 families are unfortunate in many ways, Fitter says, “but we’re very fortunate with Soo and Jae.”

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

The First FOXG1 Scientists Symposium - A Recap.

The first FOXG1 symposium was a tremendous success in bringing together scientists from around the world who are interested in research around FOXG1 to collaborate with one another to find a cure. Scientists from Japan, Australia, Italy, the UK, the US, and more, presented and held deep-diving sessions to discuss what we know and what we need to know to drive research for FOXG1 syndrome.

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.