FOXG1 Research FoundationWhat does it mean to run a Patient Organization?Rare Disease Patient Organizations (RDPO) are the unique and critical drivers of drug discovery and access for rare disease patients. Why…Jul 19, 20211Jul 19, 20211
FOXG1 Research FoundationA special-needs mom’s plea and thank you for sacrificing your social cravings.FOXG1 syndrome, Epilepsy and COVID-19Mar 16, 2020Mar 16, 2020
FOXG1 Research FoundationWhat every parent of a child with epilepsy fears — SUDEPHours before the New Year’s ball in Times Square, the heart of the FOXG1 community dropped. A precious four year old boy with FOXG1…Jan 10, 2020Jan 10, 2020
FOXG1 Research FoundationTwo Years of FOXG1 ResearchIt was Labor Day weekend 2017 when Nasha and I and a group of FOXG1 parents got on a Skype call and said, “let’s do this.”Jul 31, 2019Jul 31, 2019