Impact Report from TCSF’s 2019 Children’s National Grant

The Cute Syndrome Foundation has received a fantastic impact report from Dr. John Schreiber at Children’s National on his clinical research which we funded in 2019. This research focused on how to improve access to quality care for individuals with SCN8A. TCSF invests in scientific (both bench and clinical) research to better understand SCN8A generally–but, of course, that information is only as good as it’s actual impact on the lives of our loved ones–better treatments, better outcomes, better quality of life!

When we decided to fund this grant to Dr. Schreiber, it came from a place of frustration that we had known some important basic information about best practices for pharmaceutical treatment for individuals with SCN8A, but that information was not always making its way to the clinicians who treat our children. So, we funded Dr. Schreiber’s work to better understand why that was the case–and to advise on what could be done to change this, and quickly! 

Here is the full report of his results. We are grateful for Dr. Schreiber’s dedication to our SCN8A community and that we are able to fund this kind of import research!