The National Alliance for PANS/PANDAS Action (NAPPA) is a grassroots group of advocate moms working to increase federal research funding for the poorly understood infection-associated neuroimmune disorders PANS/PANDAS. NAPPA is partnering with The Alex Manfull Fund, a not-for-profit organization dedicated to increasing awareness, expanding education for health-care providers, and accelerating research so that no life will ever again be lost – or interrupted – by these disorders.
Our efforts, including last June’s jointly organized “Advocacy Day on Capitol Hill” as well as testimonies before Congress, have led to supportive language on PANS/PANDAS in the FY 2020-2023 Appropriations bills as well as recent grants from NIH being awarded to further research at Yale.
Research shows the irrefutable link between common infections and prolonged, highly disruptive, inflammatory reactions in the body and brain. However, diagnosing and treating patients suffering from these extremely challenging symptoms remains in its infancy. Indeed, most patients are misdiagnosed, leading to a lifetime of extreme mental health challenges, pain, and the inability to participate in school, work, and society. Advancing our understanding of PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) and PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus) will allow us to recognize and address underlying immune dysfunction with targeted treatment, creating a paradigm shift in research, medicine, and mental healthcare.
What are PANS and PANDAS?
PANS and PANDAS are horrific and life-altering neuroimmune disorders caused by a misdirected immune response to infection.
Brain inflammation leads to dramatic deterioration of cognitive, motor, sensory, social, and/or emotional abilities.
Symptoms include severe anxiety, obsessions and compulsions, suicidal ideation, severely restrictive eating, tics, loss of motor control, joint inflammation, sleep disturbance, developmental regression, and aggression. Severity ranges from mild to incapacitating.
Lack of recognition of the underlying illness often leads to further decline, extended school absences, and life-threatening symptoms.
Investing in PANS/PANDAS research and in educating the medical community would:
Drive breakthroughs in the basic science understanding of neuroimmune disorders.
Initiate the development of diagnostic tests and the identification of more effective treatments.
Prevent delayed diagnosis, protracted illness, and life-threatening symptoms.
Save families, schools and mental health care systems from high emotional and fiscal burdens.
Generate new understandings in the field of psychiatry by identifying a potentially treatable “root cause” for mental illness in some patients.
Document prepared for Congresswoman Zoe Lofgren
The National Alliance for PANS/PANDAS Action (NAPPA) is a grassroots group of advocate moms working to increase federal research funding for the poorly understood infection-associated neuroimmune disorders PANS/PANDAS. NAPPA is partnering with The Alex Manfull Fund, a not-for-profit organization dedicated to increasing awareness, expanding education for health-care providers, and accelerating research so that no life will ever again be lost – or interrupted – by these disorders.
Our efforts, including last June’s jointly organized “Advocacy Day on Capitol Hill” as well as testimonies before Congress, have led to supportive language on PANS/PANDAS in the FY 2020-2023 Appropriations bills as well as recent grants from NIH being awarded to further research at Yale.
Research shows the irrefutable link between common infections and prolonged, highly disruptive, inflammatory reactions in the body and brain. However, diagnosing and treating patients suffering from these extremely challenging symptoms remains in its infancy. Indeed, most patients are misdiagnosed, leading to a lifetime of extreme mental health challenges, pain, and the inability to participate in school, work, and society. Advancing our understanding of PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) and PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus) will allow us to recognize and address underlying immune dysfunction with targeted treatment, creating a paradigm shift in research, medicine, and mental healthcare.
What are PANS and PANDAS?
Investing in PANS/PANDAS research and in educating the medical community would:
Research at institutions including Stanford, Harvard, Columbia and the NIH over the past two decades has laid important groundwork leading to newly published studies which show promising findings: https://pubmed.ncbi.nlm.nih.gov/37742615/. Research on brain tissue samples from The Alex Manfull Fund POND Brainbank at Georgetown University is ongoing and is already yielding new insights. CASE REPORT: Clinicopathologic characteristics of PANDAS in a young adult. With support, research will change lives.
Please join our efforts by contacting info@panspandasaction.org