FRF Appoints Chief Drug Development Officer, Dr. Gai Ayalon
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.
Dr. Soo-Kyung Lee Named FOXG1 Research Foundation Chief Scientific Officer
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 Biorepository enrolling FOXG1 participants at conferences across the USA
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.
New Children's Book and Digital Platform "Joyfully Josie" Aims to Spark Conversations Around Disabilities, Rare Diseases, and Inclusion
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.
'Power of Moms': This Mom Quit Her Job To Find a Cure for Her Daughter’s Rare Disease
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.
CareTalk Podcast: Why Rare Disease Research is SO Important
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 Scientist, Earns Grant from Simon Foundation Autism Research Initiative (SFARI) for Genomics of ASD: Pathways to Genetic Therapies
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
FOXG1 Syndrome Science Symposium & Parents Conference Recap
Highlights from The FOXG1 Syndrome Science Symposium and Parents Conference 2022
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.
2022 Impact Report
2022 Research Highlights (see details below)
Breakthrough gene therapy results showing rescue of FOXG1 brain structure, behavior, memory and cognition symptoms in animal models
Positive results on initial compound drug screens to identify molecules to increase FOXG1 levels; now moving forward to larger screens
Never-before understanding of FOXG1 biology uncovered from six FOXG1 patient human cell lines and mouse models
Successful testing of guide RNAs to increase FOXG1 expression with a CRISPRa Cas-9 system
Discovered ASO sequences (antisense gene therapy) to modulate FOXG1 expression; testing initiated with Creyon Bio
FOXG1 data package presented to several biotech companies with high interest
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