Our Mission
PANDAS Network is dedicated to improving the diagnosis and treatment of children with PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) and PANS (Pediatric Acute-Onset Neuropsychiatric Syndrome). Armed with an impressive network of doctors, researchers and scientists, PANDAS Network builds public awareness, provides critical support for families and gathers data and resources to better inform parents and the medical community about these devastating and commonly misunderstood disorders.
Our Values
PANDAS Network values the complex needs of families, physicians and researchers. We are:
- Committed to supporting innovative research within the emergent field of neuro-psycho-immunology.
- Dedicated to the empowerment of stakeholders through consistent sharing of research, clinical practices and real-life outcomes.
- Driven to dramatically improve public and medical policy that allows for greater access to financial, psychological and medical resources.
Our History
Founder Diana Pohlman’s son Garrett was a happy and healthy 7-year-old when he experienced a few bouts of strep throat. He suddenly began to display frightening behaviors. After one year, his doctors determined that Garrett had PANDAS. The support of one parent and one doctor who believed in early PANDAS research allowed her lifesaving treatment for her son. Four years later, her younger daughter, age 6, also developed PANDAS. Advocating for lifesaving immunomodulation therapy stopped symptoms in both children, Diana recognized a gap in using available medical knowledge to quickly and effectively diagnose patients with PANDAS/PANS.
2009
A handful of supportive parents and doctors launched PANDAS Network to make sure that no parent would have to endure this illness alone. By the end of 2009, more than 600 families had called our founder as word of mouth spread.
2010
Dr. Susan Swedo and Dr. James Leckman, Psychiatry, Yale Child Studies Center, convened at a meeting of 50 experts at a National Institute of Mental Health conference to discuss the study of PANDAS. The result was the coining of a new term, PANS, that widened the potential triggers beyond strep infections.
2013
By 2013, the demand for more doctors and awareness of the illness had grown nationally, and we formed a strong board of directors, all of whom are parents whose children have been affected by PANDAS/PANS.
2021
Today, PANDAS Network holds an annual conference to discuss progress in the diagnosis and treatment of PANDAS/PANS. These events educate more than 300 physicians every year. Our groups have written medical studies, conducted surveys, called legislators and been on many media networks in hopes of awakening the need for early diagnosis and covered medical treatment.
Our Survey
Discover the latest information from our landmark PANDAS Network 2018 State of Our Children Survey.
Our Impact
Since 2009, PANDAS Network has improved public awareness of PANDAS/PANS onset and course of illness by providing medically accurate and scientifically reviewed information to families, patients and providers. We maintain a database of new PANDAS/PANS cases, refer parents to support groups and physicians and publish online newsletters about the latest research.
Impact by the Numbers
- $2.2 million raised to support research and resources
- 24,000+ PANDAS/PANS patients and caregivers served
- 48 states have participated in October 9th awareness events
- $640,000 in new investigative research awards
2022
- Genetic Research (Dr U. Akcan, Columbia) $50,000
- Research (Dr. S. Patel, Sydney Children’s Hospital-AustraliaD.) $50,000
2021
- PANS Antibody Research (Dr. Cunningham, University of Oklahoma) $20,981
- Brain Bank Equipment (Georgetown University) $2,000
- Young Adult Survey (Dr. D. Calaprice Consulting) $11,000
2020
- Genetic Investigation PANDAS Relapse Focus (Dr. D. Agalliu, Columbia) $40,000
- Gut Microbiome and Auto-antibody Identification (Dr. P. Kiela, University of Arizona) $53,000
- Tonsil Study and Immune Cells Microbiome (Dr. E. Harley, Georgetown University) $43,000
2018
- Biomarkers/BBB Impact and Whole Exome Genetics (Dr. D. Agalliu & Dr. T. Cutforth, Columbia) $50,000
- MRI Research (Dr. K. Williams, MGH PANDAS Clinic) $30,000
2017
- CSF/T17 Findings (Dr. W. Vargas, Columbia) $25,000
- General Investigation Use (Dr. D. Agalliu & Dr. T. Cutforth, Columbia) $7,000
2016
- Gene Samples of PANDAS/SC Children (Dr. T. Cutforth, Columbia) $7,000
2015/16
- MRI Research (Dr. K. Williams, MGH PANDAS Clinic) $30,000
- Investigating Epigenetics in PANDAS Children (Dr. T. Murphy, University of S. Florida) $40,000
2015
- Investigating Rituximab in Severely Ill PANDAS Children (Dr. B. Latimer, Georgetown) $5,000
- Investigating Virulent Strep in Specified Areas (Dr. J. Frankovich, Stanford) $2,500
- Immune Dysregulation Research (Dr. T. Murphy, USF) $4,000
2014/15
- PANS Research Project Using Cunningham Panel (Dr. M. Cooperstock, University of Missouri) $10,000
2014
- Tonsil & Adenoid Microbiome Analysis Study (Dr. L. Latimer & Dr. K. Harley, Georgetown) $5,000
2013
- JCAP Articles Characterization of PANS Children (Dr. Whitty, Dr. Tona, Dr. Murphy, Dr. Doran, University of Buffalo & USF) $3,000
Directors and Scientific Advisors
Our medical clinical advisors are a carefully vetted group of highly recognized clinicians treating PANDAS/PANS. The group’s areas of expertise represent the varying physical and psychological aspects of the disorder. The advisors work together to achieve the common goal of improving the treatment and understanding of PANDAS/PANS. The role of the MCAB is not to give medical advice.
Financials
View our latest financial reports.
Our Partners and Affiliates
