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. 

The FOXG1 Research Foundation (FRF), announced today the appointment of Dr. Soo-Kyung Lee as the new Chief Scientific Officer of the FOXG1 Research Foundation. Dr. Lee is an Empire Innovation Professor and Om P. Bahl Endowed Professor at University at Buffalo Department of Biological Sciences. Since joining the FRF in 2017, Dr. Lee has elevated the FOXG1 research center at the University at Buffalo to a global leader in the field. Her exceptional work has garnered around $3M annually from federal agencies, FRF, UB, and the Simon Foundation Autism Research Initiative (SFARI), notably receiving SFARI's 2022 Genomics of ASD: Pathways to Genetic Therapies award.

Dr. Lee’s dedication to curing FOXG1 syndrome is deeply personal as a mother to Yuna, diagnosed with FOXG1 syndrome in 2009. Her passion and commitment have inspired everyone fortunate enough to work with her. It's a rare and special circumstance to have FOXG1 parents leading the scientific journey towards effective therapeutics for all FOXG1 children globally.

CombinedBrain invites FOXG1 families to go to any CombinedBrain member’s rare disease conferences to join the Biorepository for exciting Biomarker studies. Read more to find the next conference closest to you.

Nicole Zeitzer Johnson announced today the release of her debut book, "Joyfully Josie." Designed to help parents and families discuss inclusion in the context of disabilities, this captivating children's book series aims to foster understanding of rare diseases and the experiences of medically complex individuals.

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.”

Rarebase launches a neuroscience drug discovery platform collaborating with 15 rare disease patient organizations including the FOGX1 Research Foundation, SynGAP Research Fund, , STXBP1 Research Foundation, Hereditary Neuropathy Foundation, and more. The Function platform enables drug and target discovery for rare genetic diseases.

Effie Parks celebrated podcast Once Upon a Gene Episode 094: FOXG1 advocate Nasha Fitter and SYNGAP1 advocate Mike Graglia are leaders in the rare disease community and two of the top parent leaders in the advocacy game. In this episode, they're sharing their knowledge, expertise and experiences in an information-packed masterclass on how to build a rare disease patient advocacy group, get funding and forge a path to a cure.

Taysha Gene Therapies adds FOXG1 syndrome to the pipeline of neurodegenerative CNS disorders; Taysha will develop gene developing gene replacement therapy (TSHA-117) for FOXG1 syndrome, using their novel miRNA target panel.