Rare Disease Foundation on the Road to Gene Therapy Brings Families to Fort Lauderdale from Around the World, November 15-17
The FOXG1 Research Foundation, the parent-led organization that is radically transforming the rare disease drug development landscape, is hosting an international conference in Fort Lauderdale from November 15-17, bringing families from across the globe together to learn about gene therapy advancements for FOXG1 syndrome. A highlight includes a presentation by 20-year-old Abraham Weitzman, who, though non-speaking, shares his lived experience using an innovative communication device. - November 04, 2024
Groundbreaking Study Shows Promise in AAV9 Gene Therapy for FOXG1 Syndrome; Rescue of Brain Structure Abnormalities and Deficits.
New publication shows groundbreaking result in FOXG1 AAV9 gene therapy studies, rescuing structural brain abnormalities caused by the pediatric rare disease, FOXG1 syndrome. This paper summarizing work done by the FOXG1 Research Center, led by Dr. Soo-Kyung Lee, Dr. Jae W. Lee and Dr. Kathrin Meyer (responsible for the SMA gene therapy), shows remarkable rescue of brain abnormalities using AAV9 gene therapy. - June 10, 2024
The FOXG1 Research Foundation Appoints Dr. Soo-Kyung Lee as Chief Scientific Officer to Lead Therapeutics for FOXG1 Syndrome, an Autism-related Rare Disease
The FOXG1 Research Foundation (FRF), a parent-led rare disease patient organization focused on driving therapeutics for FOXG1 syndrome, an Autism-related neurological condition, announced today the appointment of Dr. Soo-Kyung Lee as the new Chief Scientific Officer of the FOXG1 Research Foundation (FRF). Dr. Lee’s dedication to curing FOXG1 syndrome is deeply personal as a mother to Yuna, diagnosed with FOXG1 syndrome in 2009. - August 12, 2023
FOXG1 Research Foundation’s Hourinaz Behesti PhD to Present at BIO CEO & Investor Conference 2022
The FOXG1 Research Foundation, the rare disease patient organization that is driving the science to find treatments for FOXG1 syndrome, will be presenting at the BIO CEO & Conference on February 14 to discuss Tapping into Therapeutic Development for Rare CNS Disorders. Dir. of Science, Hourinaz Behesti will discuss why FOXG1 is a viable target for biotech investment, and the suite of assets that the FRF has developed and characterized to help accelerate drug development. - February 09, 2022