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 Tuesday, 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 was initially conceived of as a pediatric condition, but Alex’s battle with this debilitating autoimmune brain disorder clearly confirms it can surface on the cusp of young adulthood. At 19 years old, Alex was diagnosed with streptococcus and, shortly after treatment, developed unambiguous OCD symptoms. After a revolving door of physicians unfamiliar with PANDAS, Alex diagnosed herself when she was 24 years old. It would be two more years before Alex would be able to see a doctor who specialized in PANDAS. Finally, in the immensely capable hands of this doctor, she was poised to begin the second component of treatment. Tragically, Alex experienced a “flare” and, completely unexpectedly, she became a casualty of this horrendous condition.
Alex’s life, especially in her last years when she battled the debilitating symptoms of PANDAS, is a testament to her strength of spirit and character. The harsh reality is that there are only a handful of physicians and researchers who are even aware of PANDAS 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 her parents, William and Susan Manfull, that as soon as she was well, she intended to educate everyone about PANDAS. To deliver on Alex’s wishes and to ensure no other person loses his or her life, or lose the years it can take to treat this disease successfully, her parents established The Alex Manfull Memorial Fund to raise funds for research, education, and treatment of PANDAS.
The Alex Manfull Memorial Fund (TAMMF) is part of PANDAS Network, a 501 (c)(3) non-profit corporation. All donations are tax deductible as allowed by law – EIN #37-1666562