Title:Shedding light on a little-known autoimmune disorder

In 2018, Bill and Susan Manfull lost their 26-year-old daughter, Alexandra “Alex” Manfull, to the infection-associated neuroimmune brain condition known as Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus (PANDAS). This debilitating condition is a subgroup of Pediatric Acute-onset Neuropsychiatric Syndrome (PANS).

“Alex was central to our family and a bright light in our community. Misdiagnosed by professionals until her self-diagnosis, she died before her scheduled treatment with an acclaimed neurologist began,” shares Susan Manfull. “We didn’t want this tragedy to happen again, so we established The Alex Manfull Memorial Fund supporting PANDAS/PANS research, education, and awareness.”

Recognizing Georgetown’s neurology and immunology research leadership, they established The Alex Manfull PANDAS/PANS Fellowship Fund for the Georgetown University Medical Center. They also donated Alex’s brain to Georgetown’s Brain Bank and established the PANDAS/PANS and Other Neuroimmune Disorders (POND) Brain Bank.

“Increased research—including brain tissue research—will reveal the disorder’s underlying pathophysiological mechanisms to develop better treatments,” says Susan Manfull.

The fund creates PANDAS/PANS research and clinical learning opportunities for existing neurology and neuroimmunology fellows.

“Partnering with the Manfulls is an incredible opportunity because of their unwavering commitment to moving the PANDAS field forward,” says Carlo S. Tornatore, M.D. (G’82, M’86, R’90), neurology department chair.

“Georgetown’s investment in the brain bank and fellowship funds is incredible. If every university did that, it would advance treatment of this disorder,” adds Susan Manfull.