The Alex Manfull Fund is dedicated to raising awareness, educating professionals, and supporting research to advance understanding of the incidence and causes of immune-mediated neuropsychiatric disorders (aka PANDAS, PANS, and autoimmune encephalitis) and to develop the best diagnostic tools and treatments for these disorders, with an emphasis on their manifestation in adolescents and young adults. Our ultimate goal is that no life ever again be cut short – or interrupted – by any neuroimmune disorder.
2023 Accomplishments
We recently celebrated our second anniversary as a not-for profit organization. In just two whirlwind years of strategic activity, we’ve experienced remarkable growth. In October alone, the diligent work of The Alex Manfull Fund (TAMF) culminated in four major accomplishments.
Establishment of a Scientific and Medical Advisory Board (SMAB). Composed of 14 clinicians and researchers from multiple disciplines, this distinguished board includes the nation’s leaders in the field of infection-associated, immune-mediated neuropsychiatry.
Commitment of funds for a one-year “Training Track Fellowship” in Dartmouth’s PING (Psychiatry, Immunology, and Neurology Group) Clinic. Located in the Department of Child and Adolescent Psychiatry at Dartmouth Health Children’s, this nationally recognized clinic provides care for those with complex neurological and psychiatric disorders that occur after infection or illness (e.g., PANDAS or PANS). The fellowship is expected to consist of training in clinical care, education, and research regarding these complex disorders.
Arranged for Portsmouth’s Memorial Bridge to be Illuminated Green on PANDAS/PANS Awareness Day and wrote anOp-Ed, published in the local newspaper that explains why this major NH bridge was lit green. This awareness effort was far more impactful than I had expected — for me and for local families, as well as to those abroad where photos of the green bridge were reposted on multiple social media sites. A local parent told me that his child – who was usually unwilling to acknowledge their PANS diagnosis – asked if they could have their photo taken with the green-lit bridge.
Assembled a Team to Row in Boston’s Head of the Charles Regatta, the world’s largest such regatta, attended by upwards of 400,000 people. We worked with local advocacy groups to staff a hospitality tent with a team of professionals and young people personally familiar with these disorders who provided information about PANDAS/PANS. Alex was a nationally recognized coxswain and had coxed most of the rowers who comprised the TAMF team – we wanted to underscore that these disorders can occur in anyone, even a happy, healthy, funny, vibrant young woman like Alex. Read the story on Boston.com.
We are also immensely proud of other accomplishments earlier in 2023:
Our incredibly successful “36 Hours in Washington, DC” which included our TAMF 5K, our “Going the Distance” Dinner, and “Advocacy Day on Capitol Hill” (a National Alliance for PANS/PANDAS Action, aka NAPPA, event, jointly planned with TAMF). A portion of the funds raised went to POND Brain Bank, a repository for brain tissue from donors diagnosed with “PANDAS/PANS and Other Neuroimmune Disorders” (POND) at Georgetown University.
The first-ever case report on the neuropathological findings of PANDAS in a young adult, based on tissue from POND Brain Bank, was recently published in a scientific journal. TAMF provided the initial funds to establish POND Brain Bank, the world’s only central repository of brain tissue from donors diagnosed with “PANDAS/PANS and Other Neuroimmune Disorders,” thus providing an immensely valuable resource for researchers like those who wrote this paper and for other studies currently underway. Brain tissue from six donors is now housed in POND Brain Bank.
Educational presentations to local schools and to the psychology department colloquium at the University of New Hampshire.
Educational booths at the National Conference of State Legislators in Indianapolis as well as at annual conferences of the New Hampshire Association of School Nurses and the New Hampshire Guidance Counselor Association.
To broaden our awareness and education reach, we now have materials in Spanish as well as French.
We are confident that braiding together awareness, education, and multidisciplinary research creates the strongest bridge forward. We must replace ignorance about PANDAS/PANS with knowledge and tools to recognize and appropriately treat these disorders early. This means increasing the number of knowledgeable healthcare providers – through symposia and fellowships – and developing more effective approaches to treatment through research that shortens the time from bench to bedside.
What’s coming up in 2024?
Our second annual “36 Hours in Washington, DC” on April 12th and 13th.
Our third biennial PANDAS/PANS Symposium in Portsmouth, NH in the fall.
National Awareness Day in Portsmouth, NH on October 9th
Our first Silent Art Auction in Portsmouth, NH in the fall.
More presentations to schools and continued staffing of educational booths
The whole TAMF board is working diligently and strategically to realize our vision that no life ever again be cut short – or interrupted – by PANDAS/PANS. But our work does not come without a price tag – we urge you to be a part of the growing momentum to understand the role of infection, inflammation, and immune dysregulation in PANDAS and PANS.
Our Progress in 2023
The Alex Manfull Fund is dedicated to raising awareness, educating professionals, and supporting research to advance understanding of the incidence and causes of immune-mediated neuropsychiatric disorders (aka PANDAS, PANS, and autoimmune encephalitis) and to develop the best diagnostic tools and treatments for these disorders, with an emphasis on their manifestation in adolescents and young adults. Our ultimate goal is that no life ever again be cut short – or interrupted – by any neuroimmune disorder.
2023 Accomplishments
We recently celebrated our second anniversary as a not-for profit organization. In just two whirlwind years of strategic activity, we’ve experienced remarkable growth. In October alone, the diligent work of The Alex Manfull Fund (TAMF) culminated in four major accomplishments.
We are also immensely proud of other accomplishments earlier in 2023:
We are confident that braiding together awareness, education, and multidisciplinary research creates the strongest bridge forward. We must replace ignorance about PANDAS/PANS with knowledge and tools to recognize and appropriately treat these disorders early. This means increasing the number of knowledgeable healthcare providers – through symposia and fellowships – and developing more effective approaches to treatment through research that shortens the time from bench to bedside.
What’s coming up in 2024?
The whole TAMF board is working diligently and strategically to realize our vision that no life ever again be cut short – or interrupted – by PANDAS/PANS. But our work does not come without a price tag – we urge you to be a part of the growing momentum to understand the role of infection, inflammation, and immune dysregulation in PANDAS and PANS.