FOXG1's Nasha Fitter to Speak at The White House Rare Disease Forum for Rare Disease Day 2024
FOXG1 Research Foundation’s Nasha Fitter is a featured speaker at the White House Rare Disease Forum hosted by the The White House Office of Science and Technology Policy. the White House Office of Science and Technology Policy will host a forum marking Rare Disease Day and highlighting the Biden-Harris Administration’s commitment to supporting patients and families facing a rare disease and delivering progress against the nearly 10,000 known rare diseases that impact up to 30 million Americans. Nasha Fitter will be speaking about the issues with rare disease drug development and share her personal story about her daughter with FOXG1 syndrome.
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.
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.
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.