FOXG1 Research Foundation Co-founder and CEO Nasha Fitter was the first spotlight speaker at the White House Rare Disease Forum hosted by the White House Office of Science and Technology Policy's Health Outcomes Team February 28th ahead of Rare Disease Day 2024.
FOXG1 Parents Support Webinar: “Tell Us Abey” Communications System
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.
COMBINED Brain Interviews FOXG1 Research Foundation Co-Founder, Nicole Johnson
For FOXG1 Awareness Month, Terry Jo Bichell, the Director of COMBINED Brain spoke to Nicole Johnson about her FOXG1 journey. Nicole discusses her daughter Josie, her family, and how the FOXG1 Research Foundation was created. Learn the FRF's research strategy and more.
One Rare Disease Mom and Patient Organization Leader to Another…
Terry Jo Bichelle is the founder of COMBINED Brain, The Consortium for Outcome Measures and Biomarkers for Neurodevelopmental Disorders that is devoted to speeding the path to clinical treatments for people with severe rare genetic non-verbal neurodevelopmental disorders by pooling efforts, studies and data. Nicole Johnson is on the board of COMBINED Brian and is the co-founder and Executive Director of the FOXG1 Research Foundation.
Terry Jo speaks to Nicole about her journey as a FOXG1 mom, from the early days of searching for her daughter Josie’s diagnosis to starting the FOXG1 Research Foundation. As Terry Jo says the FOXG1 Research Foundation has “really power packed” the work in four years to drive the science towards therapeutics for all individuals with FOXG1 syndrome.
"Inside Research with Nasha" - Repurposed Drug Screening for FOXG1
We’re kicking off a new series called “Inside Research with Nasha.”
Our FOXG1 Research strategy is to leave no stone unturned. We’re looking at every possible angle in science to find disease-modifying therapies and ultimately a cure for FOXG1 syndrome and we want to keep everyone informed along the way. We’re also taking this opportunity to really explain what so many buzz words in science mean and how they fit into the research projects we are funding.
Today, we’re very excited to talk about our small molecule drug screening projects. Nasha explains some of those buzz words that covid made mainstream, like high-throughput screening, repurposing, small molecules, and more.
You can find more information about our Research Projects, our Path to a Cure and our FOXG1 Science Team on our website.
Please follow us on social @FOXG1Research so you don’t miss any of our Inside Research updates!