Supporting Research, Education, and Treatment of PANDAS in Adolescents and Young Adults
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 us that as soon as she was well, she intended to educate everyone about PANDAS. The Alex Manfull Memorial Fund supporting Research, Education, and Treatment of PANDAS in Adolescents and Young Adults has been 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.
PANDAS Network is a 501 (c)(3) non-profit corporation. Donations made to PANDAS Network are tax deductible – FEIN #37-1666562.
Prefer to mail your donation? Print out the PANDAS Network Donation Sheet and mail with a check to:
PANDAS Network/Alex Manfull Fund
655 Oak Grove Avenue #1373
Menlo Park, CA 94026
Thank you for your support!