• ORGANIZATION PROFILE
  • PANS RESEARCH AND ADVOCACY INITIATIVE PANS RESEARCH AND ADVOCACY INITIATIVE

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(37.388004,-77.71914)
 

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Mission Statement

PRAI is an organization advocating on behalf of Virginia families who suffer from pediatric auto-immune neuropsychiatric syndromes (PANDAS/PANS) by providing emotional and social support, investing in data-driven research and education, and raising awareness in the community.

Description

PRAI exists to advocate on behalf of families suffering from PANDAS/PANS. These disorders have crippling effects on families and there is little to no support among the community to provide resources.

PANDAS stands for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. It is used to describe children who have a sudden onset of symptoms such as Obsessive Compulsive Disorder (OCD) and/or tic disorders, following a strep infection (namely "strep throat" or Scarlet Fever). It is a misdirected immune response resulting in inflammation of a child’s brain.

We strive to connect the medical community to doctors and researchers who are knowledgable on diagnosis and treatment options. And raise awareness among educators, clinicians, and families throughout the state of VA while providing emotional and social support to parents navigating the waters of these complex disorders. Ultimately, we hope to raise funding for research into the mechanism that causes the conditions and find a cure.

If caught early, a long course of antibiotics can halt the auto-immune response, however, if undiagnosed and not properly treated it can leave permanent brain damage. It is said the average family goes to 8 doctors and spends 3 years seeking help before getting diagnosed.

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