Alex would be 30 years old today if her vibrant life was not tragically cut short due to a post-infectious neuroimmune disease usually referred to as PANDAS or PANS. Everything changed in a matter of hours. On Monday morning in August 2018, Alex was a cheery 26-year-old — who talked to us about her plans for a busy day at work and coming home for the weekend –but later that night, she was an anxiety-ridden, agitated person who had fallen prey to old obsessions and compulsions. By the late afternoon of the next day — unbeknownst to anyone and without precedence – her condition so rapidly deteriorated that she experienced an acute neurological episode during which she lost her precious life.
We are confident that Alex would be with us today if her condition had been diagnosed sooner and if we had better understood it. In response, we established a fund in Alex’s name with the goal that no life ever again be cut short – or interrupted — by any post-infectious neuroimmune disorder. With the initial support of PANDAS Network, we were able to grow and, today, we are off on our own to continue our mission of raising awareness, providing education, and raising funds for research on these insidious conditions, with a focus on adolescents and young adults.
There are two ways to support our work:
The Alex Manfull Fund for Brain Research at the Georgetown University Brain Bank This fund supports the Brain Bank’s research and education efforts in PANS/PANDAS; their work to encourage the use of this brain tissue in research; and their efforts to encourage the donation of other brains. This brain tissue opens brand new research opportunities and, we hope, will pique the curiosity of young medical students at Georgetown Medical School.
Alex’s brain tissue is available for research now. Hers is the first known brain characterized by PANDAS/PANS that has been made available for research. We assembled a biospecimen review committee composed of top researchers and practitioners in this area of study and tasked them with the review of all research proposals. Already Alex’s brain tissue has been used in what promises to be very significant research on genetic variants in PANS.
The Alex Manfull Memorial Fund, held in the New Hampshire Charitable Foundation, supports awareness, education, and research (not limited to brain research) to further understand the incidence, etiology, and/or treatment of post-infectious neuroimmune disorders (aka PANDAS, PANS, Autoimmune Encephalitis, and Basal Ganglia Encephalitis).
To review our Agenda for 2022, please click here.
As with all 501(c)(3) organizations, gifts to these funds are tax deductible to the full extent permitted by law.
With your help, we will make a difference in lives of many people suffering from PANDAS and PANS. Please give generously to either or both opportunities described above and support our efforts.
We are grateful for your support.