Founded in 2016, PRAI sought to provide emotional and social support to families in Richmond, VA suffering from a PANS/PANDAS diagnosis. In just 9 short months, we quickly realized that while an important and critical need in the community, family support would not address the systemic cause of chronic illness in our children. We identified a massive need for advocacy, education and research. Not just in our own city, but across the nation.
Upon parent interview, our data showed that almost 75% of the 1000 families we served brought the diagnosis to their doctors and even then, many refused to investigate forcing parents to seek outside specialists at independent cash only clinics. These families soon found healing for their children after being properly treated by these leading specialist.
The strict criteria of a PANS/PANDAS diagnosis left almost half of the children in our fold who were suffering from infection and environmentally triggered neurological disorders without care. We theorized that perhaps it was not the diagnostic criteria that needed to be amended, but the way the medical providers were defining the term "abrupt-onset" and the lack of time physicians had during appointments to conduct a detailed medical history due to constraints put upon them by the payors. Children with co-morbid disorders such as autism and down syndrome, were being refused treatment in startling numbers despite positive supporting labs and meeting the clinical diagnostic criteria. Neuroimmune disorders are complex and identification and management are challenging for even the best physicians.
Knowing that there is a powerful parental intuition that can not be ignored, PRAI began planning to bring together a group of physicians and researchers across multiple disease sets that were willing to collaborate to identify ways to help a larger subset of children suffering from neuroimmune disorders and related chronic illness and bring that to the mainstream. We began engaging state legislatures, hospital systems and corporations to bring awareness around the link between mental health and infectious disease.
PRAI hopes to bring the massive and unaddressed crisis ailing our children to the mainstream; the rapidly increasing mental health crisis in developed countries must be addressed differently than years passed. We believe this advocacy, education and research starts from the ground up on a state level, working together towards a common goal with committed partnerships throughout the US and even worldwide. We are committed to starting our work in Virginia and the North Carolina's and eventually shaping health policy through advocacy, education and medical research that will ultimately help children everywhere.