Thanks to supporters like you, we are racing towards a cure with a clear roadmap! In six years, we have blazed a trail from basic to translational science. We have now identified a very promising gene therapy program that we are working to bring to clinical trials.

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.

My FOXG1 story, written by 20-year old Abey, who was diagnosed with FOXG1 syndrome last year.

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.

FOXG1 Research Foundation July Newsletter 2023!

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.

CafeMom:
Becoming a mother often empowers us to do things we didn't even think we were capable of. Moms break down barriers and overcome challenges and obstacles for their kids every day, and Nasha Fitter is an exceptional example of this. Nasha's daughter was diagnosed with a rare genetic disorder, FOXG1 syndrome, when she was 7 months old.

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.

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