Why Do We Exist?
PRAI exists to spread awareness of neuroimmune disorders, advocate for patient care, and support data-driven research that will ultimately lead to effective treatments and cures for these disorders. To accomplish this, PRAI raises and deploys donations to educate physicians and clinicians, fund scientific studies, enable parents to contribute to the scientific process through registering information in data repositories for trend analysis and engaging in pilot projects through patient-centered research initiatives. PRAI’s dedicated personnel and volunteers are constantly engaging with medical practitioners, researchers, and legislators to make critical connections and share the latest information.
Accomplishments and Looking Ahead.
In our short history, PRAI has made huge strides, having created the first annual PANS / PANDAS walk to raise considerable funding, 100% of which was set-aside for research initiatives. We have also experienced success in establishing a PANS / PANDAS advisory council for the State of Virginia, successfully advocated for better diagnostics and care options at 3 major medical hospitals, provided education to over 1,000 school administrators, educators, and therapists and made considerable progress toward a national research advisory group.
In 2018, PRAI will build upon our successes by:
- Funding important research, including awarding the first large seed grant aimed at encouraging innovative researchers to study PANS/PANDAS.
- Launching a nationwide, patient-driven medical registry, which can assist researchers in identifying critical trends that may unlock the next big advance in understanding neuroimmune disorders.
- Hosting a variety of informational sessions for physicians and therapists as well as sponsoring events that bring the leading minds in neurology, immunology, pediatrics, infectious disease, psychology, and more together to discuss PANS, PANDAS, and associated disorders.
How is Our Research Approach Different?
As an organization that was founded by the families of children suffering from neuroimmune disorders, we are familiar with the struggle of receiving care. PRAI melds the immeasurable devotion of caring parents with the cutting-edge science and research that will lead the discussion and advancements in treatment. We believe that our children don’t have years to wait for a cure to be found — so we prioritize funding faster scientific methods that will pioneer discovery and drive results, including data science, molecular medicine, genetics and collaborative multi-center basic and translational research studies.
How You Can Help.
We warmly invite you to join us in this critical fight so that families may be spared from the pain and confusion of trying to find care for disorders that are poorly understood by many pediatricians, not widely accepted by insurance, and often diagnosed way too late. Donate or volunteer today to be a part of the change.