The Alex Manfull Fund Forms Scientific and Medical Advisory Board
PRESS RELEASE
The Alex Manfull Fund, a leading nonprofit organization combating infection-associated immune-mediated neuropsychiatric disorders like PANDAS and PANS, proudly announces the formation of its multi-disciplinary Scientific and Medical Advisory Board to assist them in advancing research initiatives and educational efforts in the emerging field of immunopsychiatry.
Portsmouth, NH, December 5, 2023 – Fourteen distinguished physicians and researchers in the field of infection-associated, immune-mediated neuropsychiatric disorders unite to form the inaugural Scientific and Medical Advisory Board for The Alex Manfull Fund (TAMF). Many members of this distinguished board are widely recognized as pioneers in this relatively new field and have conducted seminal research to understand and define PANDAS and PANS.
PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder associated with Streptococcal Infections) and PANS (Pediatric Acute-Onset Neuropsychiatric Syndrome) are complex and sometimes debilitating conditions typically triggered by common infections that primarily impact children but also adolescents and adults.
These disorders present like mental illness, but the causes are different, and the types of treatment required for lasting recovery are different. Research is accumulating to show that infections such as strep, Lyme, mycoplasma pneumonia, and even COVID can lead the immune system to dysregulate and attack healthy brain tissue, setting the stage for inflammation to occur.
PANDAS, first described by researchers at the National Institute of Mental Health in the 1990s and now subsumed by a broader category of neuropsychiatric disorders called PANS, is frequently misdiagnosed by pediatricians and other physicians. More research is desperately needed.
“It often takes many years and many doctor visits to get a diagnosis and proper treatment. People should not be suffering when there is hope for healing,” says Sheilah Gauch, LICSW, MEd, who is a Board Member of TAMF and Principal of Dearborn Academy, a therapeutic day school in Newton, Massachusetts.
TAMF’s Scientific and Medical Advisory Board brings together medical practitioners and researchers from across the United States with expertise that includes neurology, neuropathology, immunology, psychiatry, rheumatology, pediatrics, gastroenterology, epidemiology, neuroethics, and the microbiome to reflect the multi-disciplinary nature of the causes and treatment required for these conditions.
Co-chairing this illustrious board are Juliette Madan, MD, MS and Richard Morse, MD from the highly respected PING (Psychiatry, Immunology, Neurology Group) Clinic at Dartmouth Hitchcock Medical Center. Together with other esteemed members, including experts from Stanford Children’s Hospital, Georgetown University Medical Center, University of Arizona College of Medicine, Massachusetts General Hospital/Harvard Medical School, and Tufts Medical Center, they form an impressive group: Mark Pasternack, MD; Julia Zhang, MD; Kyle Williams, MD, PhD; Melissa McCormack, MD, PhD; Beth Latimer, MD; Pawel Kiela, DVM, PhD; Brent Harris, MD, PhD; Jennifer Frankovich, MD, MS; Scott Dylla, PhD; James Giordano, PhD, MPhil; Peggy Chapman, PNMHCS; and Shannon Delaney, MD.
“Our Scientific and Medical Advisory Board will serve as a link between TAMF and the medical and research communities and play a leading role in advising us how we can most effectively advance understanding of the causes, underlying mechanisms, and best treatments for patients with these serious disorders,” explained Dr. Manfull.
ABOUT THE ALEX MANFULL FUND
The Alex Manfull Fund (TAMF) was founded by Susan and William Manfull in 2018 to increase awareness, education, and research funding to improve outcomes for children, adolescents, and young adults suffering from neuroimmune disorders such as PANDAS/PANS. Their unwavering commitment is rooted in the memory of their only child, Alex Manfull, whose life was tragically cut short by PANDAS/PANS when she was 26 years old. In 2022, TAMF was reconceived as a 501(c)(3) organization and the current board was established. In addition, In addition to establishing their Scientific and Medical Advisory Board composed of some of the nation’s most distinguished physicians and researchers in the field of neuroimmune disorders, TAMF was instrumental in establishing the POND Brain Bank at Georgetown University Medical Center, the country’s only repository for brains from individuals diagnosed with PANDAS or PANS and Other Neuroimmune Disorders (POND). The repository makes tissue available for research to advance the understanding of these disorders. As a 501(c)(3) organization, TAMF is devoted to ensuring that no life ever again be cut short – or interrupted – by any neuroimmune disorder. Please visit: https://thealexmanfullfund.org/
BACKGROUND INFORMATION ON PANDAS/PANS
Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections (PANDAS), now considered a subgroup of Pediatric Acute-Onset Neuropsychiatric Syndrome (PANS), occurs after a strep infection whereas the broader category, PANS, occurs after a bacterial or viral infection (often unspecified) or exposure to environmental toxins. In some individuals, the immune system misdirects its response, attacking healthy brain tissue and setting the stage for inflammation in the brain. Much like long-COVID, the symptoms can vary from person to person. Symptoms fall on a continuum from mild to severe and wax and wane in severity. They include obsessions and compulsions, tics, restricted eating, separation anxiety, increased irritability, sensory issues, sleep disturbances, extreme fatigue, joint pain, rage, impulsivity, and suicidal ideation. The onset of symptoms is often sudden and can be dramatic. Despite the prevalence of these disorders and their debilitating impact on a child’s or young adult’s functioning, few doctors are trained to identify and treat PANDAS/PANS.
The Alex Manfull Fund Forms Scientific and Medical Advisory Board
PRESS RELEASE
The Alex Manfull Fund, a leading nonprofit organization combating infection-associated immune-mediated neuropsychiatric disorders like PANDAS and PANS, proudly announces the formation of its multi-disciplinary Scientific and Medical Advisory Board to assist them in advancing research initiatives and educational efforts in the emerging field of immunopsychiatry.
Portsmouth, NH, December 5, 2023 – Fourteen distinguished physicians and researchers in the field of infection-associated, immune-mediated neuropsychiatric disorders unite to form the inaugural Scientific and Medical Advisory Board for The Alex Manfull Fund (TAMF). Many members of this distinguished board are widely recognized as pioneers in this relatively new field and have conducted seminal research to understand and define PANDAS and PANS.
PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder associated with Streptococcal Infections) and PANS (Pediatric Acute-Onset Neuropsychiatric Syndrome) are complex and sometimes debilitating conditions typically triggered by common infections that primarily impact children but also adolescents and adults.
These disorders present like mental illness, but the causes are different, and the types of treatment required for lasting recovery are different. Research is accumulating to show that infections such as strep, Lyme, mycoplasma pneumonia, and even COVID can lead the immune system to dysregulate and attack healthy brain tissue, setting the stage for inflammation to occur.
PANDAS, first described by researchers at the National Institute of Mental Health in the 1990s and now subsumed by a broader category of neuropsychiatric disorders called PANS, is frequently misdiagnosed by pediatricians and other physicians. More research is desperately needed.
“It often takes many years and many doctor visits to get a diagnosis and proper treatment. People should not be suffering when there is hope for healing,” says Sheilah Gauch, LICSW, MEd, who is a Board Member of TAMF and Principal of Dearborn Academy, a therapeutic day school in Newton, Massachusetts.
TAMF’s Scientific and Medical Advisory Board brings together medical practitioners and researchers from across the United States with expertise that includes neurology, neuropathology, immunology, psychiatry, rheumatology, pediatrics, gastroenterology, epidemiology, neuroethics, and the microbiome to reflect the multi-disciplinary nature of the causes and treatment required for these conditions.
Co-chairing this illustrious board are Juliette Madan, MD, MS and Richard Morse, MD from the highly respected PING (Psychiatry, Immunology, Neurology Group) Clinic at Dartmouth Hitchcock Medical Center. Together with other esteemed members, including experts from Stanford Children’s Hospital, Georgetown University Medical Center, University of Arizona College of Medicine, Massachusetts General Hospital/Harvard Medical School, and Tufts Medical Center, they form an impressive group: Mark Pasternack, MD; Julia Zhang, MD; Kyle Williams, MD, PhD; Melissa McCormack, MD, PhD; Beth Latimer, MD; Pawel Kiela, DVM, PhD; Brent Harris, MD, PhD; Jennifer Frankovich, MD, MS; Scott Dylla, PhD; James Giordano, PhD, MPhil; Peggy Chapman, PNMHCS; and Shannon Delaney, MD.
“Our Scientific and Medical Advisory Board will serve as a link between TAMF and the medical and research communities and play a leading role in advising us how we can most effectively advance understanding of the causes, underlying mechanisms, and best treatments for patients with these serious disorders,” explained Dr. Manfull.
ABOUT THE ALEX MANFULL FUND
The Alex Manfull Fund (TAMF) was founded by Susan and William Manfull in 2018 to increase awareness, education, and research funding to improve outcomes for children, adolescents, and young adults suffering from neuroimmune disorders such as PANDAS/PANS. Their unwavering commitment is rooted in the memory of their only child, Alex Manfull, whose life was tragically cut short by PANDAS/PANS when she was 26 years old. In 2022, TAMF was reconceived as a 501(c)(3) organization and the current board was established. In addition, In addition to establishing their Scientific and Medical Advisory Board composed of some of the nation’s most distinguished physicians and researchers in the field of neuroimmune disorders, TAMF was instrumental in establishing the POND Brain Bank at Georgetown University Medical Center, the country’s only repository for brains from individuals diagnosed with PANDAS or PANS and Other Neuroimmune Disorders (POND). The repository makes tissue available for research to advance the understanding of these disorders. As a 501(c)(3) organization, TAMF is devoted to ensuring that no life ever again be cut short – or interrupted – by any neuroimmune disorder. Please visit: https://thealexmanfullfund.org/
BACKGROUND INFORMATION ON PANDAS/PANS
Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections (PANDAS), now considered a subgroup of Pediatric Acute-Onset Neuropsychiatric Syndrome (PANS), occurs after a strep infection whereas the broader category, PANS, occurs after a bacterial or viral infection (often unspecified) or exposure to environmental toxins. In some individuals, the immune system misdirects its response, attacking healthy brain tissue and setting the stage for inflammation in the brain. Much like long-COVID, the symptoms can vary from person to person. Symptoms fall on a continuum from mild to severe and wax and wane in severity. They include obsessions and compulsions, tics, restricted eating, separation anxiety, increased irritability, sensory issues, sleep disturbances, extreme fatigue, joint pain, rage, impulsivity, and suicidal ideation. The onset of symptoms is often sudden and can be dramatic. Despite the prevalence of these disorders and their debilitating impact on a child’s or young adult’s functioning, few doctors are trained to identify and treat PANDAS/PANS.