Alex Manfull Fund for Brain Research

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About

Alexandra “Alex” Coulter Manfull – prolific writer, voracious reader, artist, photographer, New York Times crossword whiz, television/film buff, fashionista, runner, financial analyst, dear friend to many, and daughter extraordinaire — died August 7, 2018 in Washington, D.C. As a graduate of Phillips Exeter Academy and Princeton University, she had a successful start on Wall Street, had just started an exciting job in finance in Washington, D.C., and was described as a rising star. Alex had her whole life in front of her. Instead, she succumbed to PANDAS at 26 years old.

PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus) is characterized by an acute onset of obsessions and compulsions and/or tics following a Group A Streptococcal infection. Other symptoms may follow, including: restricted eating, separation anxiety, general anxiety, sleep disorders, personality changes, severe mood swings, irritability, ADHD-type behaviors, dysgraphia, loss of math skills, explosive rage, extreme impulsivity, and suicidal ideation. In extreme cases, all facets of daily life can be affected such that some patients may become unable to speak, eat, or even dress themselves. All symptoms invariably wax and wane.

PANDAS is part of a broader category of disorders called PANS (Pediatric Acute On-set Neuropsychiatric Syndrome) which present in much the same manner, but for which the trigger may not be known. 

Both PANDAS and PANS are more likely to occur in childhood but can and do occur in adolescence and, as was the case with Alex, in adulthood. 

The harsh reality is that there are only a handful of physicians and researchers who are even aware of PANDAS or PANS and most health insurance companies do not pay for treatment. Alex was fortunate and persevering enough to connect with one of the best physicians in the country — not everyone even knows how to begin such a search. It is urgent that this situation changes.

Alex told us that as soon as she was well, she intended to educate everyone about PANDAS. The Alex Manfull Fund for Brain Research at Georgetown University Medical Center will do just that, by supporting PANDAS and PANS research and education for medical students, physicians and care providers, and parents and patients. In particular, the fund will support the Georgetown Brain Bank's coordination of research efforts utilizing Alex's brain to better understand PANDAS and PANS. 

Click here to view recorded sessions from the October 2019 "PANDAS/PANS: Advances in Diagnosis and Treatment for Post-Infectious Autoimmune Basal Ganglia Encephalitis" symposium. 

Questions regarding the fund may be directed to Rachel LaVigne, Assistant Director of Development for Georgetown University Medical Center 

rl947@georgetown.edu            202-440-2019 


Gifts via check may be made out to Georgetown University and mailed to the following address. Please note "Alex Manfull Fund" in the memo line. 

Georgetown University Office of Gift Administration 

2115 Wisconsin Ave. NW Suite 500 

Washington, DC 20007 

202-687-1690


Georgetown University is designated a 501(c)(3) organization. Charitable contributions to the university are tax-deductible as allowed by law.

Updates
With Gratitude for Your Generous Support

With your generous support, we have officially met the $10,000 challenge gift goal AND the overall goal of raising $50,000 of initial funding for the Alex Manfull Memorial Fund! 

Your partnership enables Georgetown University Medical Center to fund further research to better understand PANDAS, and to educate physicians, practitioners, and the wider community on PANDAS and PANS. 

Thank you for honoring Alex and contributing towards a brighter future for the PANDAS community. 

65 days ago by Rachel LaVigne

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