The Alex Manfull Memorial Fund: Supporting Research, Education and Treatment of PANDAS in Adolescents and Young Adults

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PANDAS/PANS Symposium to be held in Portsmouth, NH: Expert Physicians and Researchers Present Advances in Understanding Post-Infectious Autoimmune Encephalitis

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The Manfulls are hopeful that physicians, psychologists and other mental health workers, school nurses, and other professionals working with young patients will want to learn more about PANDAS and PANS so that they can recognize and diagnose these disorders and treat them promptly.

The grieving parents of a brilliant daughter, who lost her life to a debilitating autoimmune encephalitis disorder called PANDAS, are launching their first public event aimed at combating such disorders. The day-long symposium will take place on October 26 in Portsmouth, NH.

Susan and William Manfull established The Alex Manfull Memorial Fund Supporting Research, Education, and Treatment of PANDAS in Adolescents and Young Adults, with the goal that no life ever again be cut short by PANDAS.

Entitled “PANDAS/PANS: Advances in Diagnosis and Treatment for Post-Infectious Autoimmune Basal Ganglia Encephalitis,” this day-long symposium has the explicit goal of increasing awareness and education about these devastating and sometimes deadly disorders. The event coincides with the recent passage of NH Senate Bill 224, that requires insurance companies to provide coverage for treatment of “pediatric autoimmune neuropsychiatric disorders.” It will include presentations by some of the nation’s top physicians and researchers in this relatively new field — all focused on spreading the word about recognizing and treating these very serious disorders.

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 lability, personality changes, aggression and rage.

With PANDAS, symptoms surface after exposure to Group A Streptococcus; in the case of PANS, acute symptoms can present with or without a specifically identified trigger (e.g., following an infection such as mycoplasma pneumonia, flu, Lyme disease or a metabolic disorder). These disorders typically present before puberty, but also may surface for the first time in adolescence and young adulthood.

Among the speakers will be the 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).

New Hampshire was the fifth state to pass legislation requiring insurance companies to cover treatment and is the only state in the northeast to mandate such coverage. The Manfulls are hopeful that physicians, psychologists and other mental health workers, school nurses, and other professionals working with young patients will want to learn more about PANDAS and PANS so that they can recognize and diagnose these disorders and treat them promptly. It is critical that these disorders be recognized as early as possible for treatment to be most effective. Thus, the symposium’s target audience is health practitioners although there will be room for other interested individuals.

Born and raised in Portsmouth, NH., Alex Manfull was a graduate of Phillips Exeter Academy and Princeton University. A rising star on Wall Street, she had just started an exciting job in finance in Washington, D.C. She had her whole life before her when she succumbed to PANDAS at 26 years old.

From earliest childhood, Alex also distinguished herself as an intrinsically motivated and talented artist and writer as well as a gifted athlete. The symposium will coincide with a retrospective exhibition of her artwork at the Seacoast African American Cultural Center, located in the Discover Portsmouth Center where the symposium will be held, in downtown Portsmouth, NH.

This symposium was made possible through a generous gift from the Minerva Foundation. Special thanks to PANDAS Network for their support of the symposium and for the work they do every day in helping PANDAS/PANS patients and families.

Entrance to the art exhibition is free although donations are most welcome. The fee to attend the day-long symposium is $85. Please visit https://alex-manfull-memorial-fund.eventcreate.com/ to register. All fees will go to The Alex Manfull Memorial Fund Supporting Research, Education, and Treatment of PANDAS in Adolescents and Young Adults.

About The Alex Manfull Memorial Fund:
This fund was established in the hope that other young adults, as well as children and adolescents, shall have greater treatment options and that never again will another life be cut short due to PANDAS. http://www.TheAlexManfullMemorialFund.com

About PANDAS Network:
PANDAS Network is 501c3 organization 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 strives to collaborate with subject matter experts, build public awareness, provide family support, and gather data and resources to better inform parents and the medical community about PANDAS and PANS. http://www.PandasNetwork.org

To register, or for more information about the symposium, Alex Manfull, or the art exhibition,
please visit https://alex-manfull-memorial-fund.eventcreate.com or contact Susan Manfull at
(603) 828-1766 or smanfull@comcast.net

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Kathleen Silverstein
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