Lighting Up for PANDAS/PANS

Community News
Published October 22, 2024

PORTSMOUTH — If you happened to cross over or view the World War I Memorial Bridge connecting Portsmouth and Kittery last week, you might have noticed that all of the bright lights had turned green.  Over 200 bridges and landmarks around the world also turned green or red to shed light on PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) and a subcategory of PANS known as PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder w/Streptococcal Infections) Wednesday night.

PANS and PANDAS are such rare conditions that their symptoms are often overlooked or not properly interpreted by physicians and other practitioners.  PANS can occur after a common infection that, in a small number of people, causes the body’s autoimmune system to mistakenly turn on the central nervous system.  Sudden changes to a child’s personality can occur including obsessive-compulsive behaviors, anxiety, tics, abnormal movements, compromises to math and handwriting abilities, sensory sensitivities, restrictive eating, sleep disturbances and more.  The PANDAS, a subcategory of PANS is triggered by a strep infection.  Complex neurological and neuropsychiatric abnormalities subsequently ensue. 

Susan and Towny Manfull of Portsmouth lost their 26 year-old daughter Alex Manfull to PANDAS.

Locally, The Alex Manfull Fund seeks to drive increased awareness of these frightening conditions for the public and for medical practitioners who may encounter such rare and complex symptomologies.  Susan and Towny Manfull of Portsmouth lost their 26-year-old daughter to PANDAS.  Alex was a prolific artist in her preteen years, an accomplished scholar and graduate of Phillips Exeter Academy and Princeton.  She made her young mark on Wall Street before pushing on to challenge Washington, D.C.  Her life was full and full of many friends she met along the way.  Despite all appearances, Alex’s achievements in life were being sadly undermined by PANDAS.  Since her passing in 2018, Susan and Towny have been driven to make certain that other parents don’t share their tragedy.  They have worked with local and national specialists who are keen on further understanding PANDAS and PANS, including the use of brain tissue from the POND Brain Bank at Georgetown University, a brain repository established when the Manfull’s donated their daughter’s brain.  They started the Alex Manfull Fund.  They have stocked their board with doctors and researchers knowledgeable in this highly specialized arena, and they have sought to attract supporters who know how to make a difference in the Seacoast community.

Among those supporters is Gov. Chris Sununu, who proclaimed that for New Hampshire Oct. 9 is a day where “it is imperative that there be a greater public awareness of this health issue, and more must be done to increase activity at the local, state, and national levels so that children can be more quickly diagnosed and treated.”  A gathering of local supporters at the foot of the WWI Memorial Bridge Wednesday included Reverend Robert Thompson who addressed the crowd. Alex Manfull Fund board member Nancy Dougherty who is a Portsmouth-based Lyme disease specialist affiliated with Johns Hopkins Medical School also shared some of her knowledge of autoimmune afflictions with the vested concerned audience.  Portsmouth City Councilors John Tabor and Kate Cook were on hand to lend personal support and that of their families.  There was a heartfelt rendition of the national anthem led by Guilded Age and CODA actress Kayla Caulfield.  Tears of joy were shed as the entire audience spontaneously joined Kayla.

Next up, The Alex Manfull Fund will be hosting its 2024 PANDA/PANS Symposium on Saturday, Nov. 2 at St. John’s Episcopal Church, 100 Chapel St. in Portsmouth from 9 a.m. to 5:30 p.m.  This symposium is for physicians, psychologists, nurses and other health practitioners to advance the understanding and treatment of neuroimmune psychiatric disorders such as PANDAS and PANS.

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