Alex Manfull was a brilliant risking star who just secured a job on Wall Street when she succumbed to PANDAS, a debilitating autoimmune encephalitis disorder, at just 26 years old. Her parents, Susan and William Manfulll, established the Alex Manfull Memorial Fund supporting research, education, and treatment of PANDAS in adolescents and young adults, with the goal that no life should be lost to PANDAS. The memorial fund will launch a public event aimed at combating such disorders. A day-long symposium will occur October 26, 2019 in Portsmouth, NH.
Entitled “PANDAS/PANS: Advanced in Diagnosis and Treatment for Post-Infectious Autoimmune Basal Ganglia Encephalitis,” the day-long symposium has the explicit goal of increasing awareness and education about these devastating and at times deadly disorders. It coincides with the recent passage in New Hampshire of NH Senate Bill 224, requiring insurance companies to offer coverage for treatment of “pediatric autoimmune neuropsychiatric disorders.”
What is PANDAS/PANS?
Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections (PANDAS) and Pediatric Acute-onset Neuropsychiatric Syndrome (PANS) refer to disorders involving sudden-onset neuropsychiatric symptoms such as obsessions and compulsions, self-restricted food intake, separation anxiety, motor and/or vocal tics, emotional liability, personality changes, aggression and rage.
Speakers and presenters include leading practitioners and researchers in this emerging field:
- Tyler Cutforth, PhD (Molecular and Cell Biologist/ Researcher at Agalliu Lab, Department of Neurology, Columbia University)
- Nancy Dougherty (Education & Communications Consultant for the Johns Hopkins Lyme Disease Research Center).
- Earl H. Harley, Jr., MD (Pediatric Otolaryngologist and Professor, Department of Otolaryngology, Georgetown University)
- Pawel Kiela, DVM, PhD (Endowed Professor in Autoimmune Disease Research, Steele Children’s Research Center and the Departments of Pediatrics and Immunobiology, University of Arizona)
- Beth Latimer, MD (Pediatric Neurologist specializing in the area of PANDAS/PANS, founder of the Latimer Neurology Center in D.C.)
- John McDermott, MD (retired Cardiac Surgeon and parent of a young adult with PANDAS/PANS)
- Mark S. Pasternack, MD (Chief of Pediatric Infectious Disease, Massachusetts General Hospital)
- Kyle Williams, MD, PhD (Director of the Pediatric Neuropsychiatry and Immunology Program in the OCD and Related Disorders Program at Massachusetts General Hospital/Instructor in Psychiatry at Harvard Medical School)
- The Keynote Speaker will be James Giordano, PhD (Chief, Neuroethics Studies Program and Professor, Department of Neurology, Georgetown University Medical Center).
Call to Action: Does it sound like you or a loved one are dealing with PANDAS/PANS? If so, look into this symposium if you are in the New England area. Sign up for our Newsletter, too, as we will track emerging clinical research in this field. Also consider supporting the Alex Manfull Memorial Fund.