We are encouraging gifts to support groundbreaking research at the Jan and Dan Duncan Neurological Research Institute (Duncan NRI) at Texas Children’s Hospital, where they recently discovered the PPFIA3-related autism spectrum disorder, epilepsy, and neurodevelopmental delays.

Our beautiful daughter Kaci suffers from this disorder, but we didn’t know that for a long time. When asked, we often just described her main challenges: epilepsy, severe generalized developmental and cognitive delays, hypotonia, oral dysphagia, reflux, and sialorrhea. Without a diagnosis, our child, our life, could not be understood by most people for years. 

In January 2024, Dr. Hsiao-Tuan Chao – Principal Investigator at the Duncan NRI – changed our lives. After four years of studying Kaci’s genes, Dr. Chao and her team discovered that the PPFIA3 gene produces a protein in neurons that is critical in the formation and function of synapses – structures that foster communication between brain cells. This is the first study to link a human neurological disease to a PPFIA3 gene change. However, this discovery is only the first step, more research is needed to better understand PPFIA3 changes in childhood neurological disorders.

Given this major discovery, time is of the essence, and with your support a safe and effective treatment can be developed in time to change so many lives of children like Kaci. Please join us now in supporting this life-changing research conducted by Dr. Chao by making a gift to the Duncan NRI. Just click on the red “Donate Now” button above! 

With love and hope,

The Creed Family