The Alex Manfull Fund 2022 PANDAS/PANS Symposium


The Alex Manfull Fund is proud to have presented its second all-day symposium dedicated to providing practitioners with the latest information about PANDAS and PANS. Presentations included guidance on how to distinguish these immune-mediated neuropsychiatric disorders from primary psychiatric disorders. The latest research on the role of genetics, the microbiome, and cytokines was presented.

Our speakers included top clinicians and researchers in this field from across the US and Europe.

Attendance was limited to physicians, psychologists, nurses, mental health professionals, researchers, policymakers, and other individuals involved in treatment, education, research, or funding related to such disorders.

LOCATION
Portsmouth Historical Society
10 Middle Street
Portsmouth, NH 03801

DATE & TIME
October 1, 2022
9:00 a.m. – 6:15 p.m.


Presenters

Dritan Agalliu, PhD
Associate Professor of Pathology and Cell Biology
Columbia University
New York, NY
Title: Immune-mediated Mechanisms Driving Neurovascular and Neuronal Circuitry Dysfunction in Post-Streptococcal CNS Sequelae
Dr. Dritan Agalliu, PhD is an Associate Professor of Pathology and Cell Biology at Columbia University and founder of the Agalliu Lab. Research in his laboratory is focused on understanding the cellular and molecular mechanisms that regulate formation of the blood-brain barrier in the central nervous system (CNS) and the mechanisms of barrier breakdown in a variety of CNS diseases such as stroke and autoimmune diseases having symptoms that include blood-brain barrier failure, using a variety of genetic, molecular, cellular and imaging approaches. The lab has developed novel mouse strains that allow the visualization of changes in structural components of the blood-brain barrier, namely tight junctions and caveolae, in living animals for several CNS diseases (e.g. stroke and multiple sclerosis) in order to understand the cellular mechanisms underlying barrier impairment in these neurological disorders. In addition, Agalliu Lab is investigating the role of Wnt/β-catenin signaling in development of the CNS vasculature and formation of the blood-brain barrier, and are exploring the role of this pathway in repairing the barrier in diseases where its function is compromised (e.g. stroke and autoimmune disorders). Finally, they are investigating the mechanisms of immune cells entry into the CNS in a novel animal model for a neuropsychiatric disorder caused by multiple Streptococcus pyogenes infections, in order to understand how immune cells induce neurovascular, synaptic and behavioral deficits in the brain.
Bio
Peggy Chapman, PNMHCS
Clinical Nurse Specialist
Margaret Chapman, PC
Hingham, MA
Title: Evaluating Treatment Resistant Mental Illness Through the Lens of Immune-Mediated Neuropsychiatric Disorders in a School-Based Setting
Margaret (Peggy) Chapman is a Clinical Nurse Specialist, Board Certified, in Child and Adolescent Psychiatric Nursing. Peggy received her Bachelor of Science in Nursing at Creighton University in 1976. In 1982 she graduated from Boston University with a Master of Science in Nursing and was certified as a Clinical Nurse Specialist in 1983. She has worked in various capacities in the Omaha and the Boston areas as a Nurse Manager of Child, Adolescent and Adult psychiatric units. She has been a child, adolescent and adult therapist and has done psychopharmacology for all ages since 1998.  She is the Medical Advisor to the New England PANS/PANDAS Association, a psychiatric consultant to Dearborn Academy and a co-owner of Bridge Consultants, which specializes in the diagnosis and treatment of neuroimmune psychiatric disorders. She treated her first patient with PANDAS in 1998.
Bio
Presentation
Janet L. Cunningham, MD, PhD
Associate Professor
Uppsala University
Uppsala, Sweden>
Title: The Emerging Field of Adult Clinical Immunopsychiatry: Cases, Early Observations and Questions Left to Answer
Janet L Cunningham is an Associate Professor in Experimental Psychiatry and is a board certified specialist in Clinical Psychiatry. She leads the Immunopsychiatry team at Uppsala University, Sweden, that aims to develop tools to differentiate adaptive from maladaptive immunological responses in treatment-resistant patients with severe psychiatric symptoms in order to identify patients for whom immunomodulation therapy would be beneficial. The hypothesis is that different types of maladaptive immunological responses may contribute to some cases of psychiatric disease and these may include immunodeficiencies, vulnerabilities such as difficulty in mobilizing anti-inflammatory processes needed for inflammation resolution and autoimmunity. To ensure relevance for clinical psychiatry, research is tightly integrated with patient care at Uppsala University Hospital. Cross-sectional and longitudinal data is continuously collected from daily practice and clinical trials. The strategy is to use and compare knowledge gained by in-depth analysis of individual cases and large-scale analysis of markers related to the immune system in broad patient cohorts to identify markers with variation within the patient group with potential relevance for diagnosis and clinical prognosis. The research questions have the potential to directly impact clinical practice in psychiatry. Recruitment for an academic randomized double blinded controlled trial using Rituximab for autoimmune OCD and psychosis is planned for the late spring 2021 (Clinical trials identifier NCT04323566). To improve both clinical and research collaboration in the area of immunopsychiatry on a national level, she had recently initiated the “The Swedish Immunopsychiatry Alliance”.
Bio
Presentation
Jennifer Frankovich, MD, MS
Director of PANS Research Program & Co-Director of the Immune Behavioral Health Clinic, Rheumatologist
Stanford University
Menlo Park, CA
Title: Inflammation Clues in PANS
Jennifer Frankovich, MD MS is a Clinical Professor in the Department of Pediatrics, Division of Allergy, Immunology Rheumatology (AIR) at Stanford University/Lucile Packard Children’s Hospital (LPCH). Dr. Frankovich’s clinical expertise is in systemic inflammatory and autoimmune diseases that co-occur with psychiatric symptoms. She completed her training in pediatrics, pediatric rheumatology, and clinical epidemiology at Stanford. Jenny directs the Stanford PANS Program (2012- present) and along with her collaborators have created a longitudinal clinical database and large biorepository of patient and control biospecimens. In addition to generating clinical data to better understand the PANS illness, she is collaborating with over 15 basic science labs who aim to understand the immunological underpinnings of the illness. Dr. Frankovich also co-led the development of evaluation and treatment guidelines for post-infectious neuropsychiatric conditions including PANS and autoimmune encephalitis. The Immune Behavioral Health Research program has been recently named a site for an upcoming sponsored Phase III, placebo controlled double blind IVIG Clinical Trial and Dr. Frankovich is also co-leading an Autism “wearables” study at Stanford with genomist Mike Snyder, PhD. Her over-arching career goal is to develop better diagnostic algorithms and treatment pathways for children with sudden severe psychiatric deteriorations caused by post-infectious inflammatory processes.
Bio
Presentation
Sheilah Gauch, LICSW, MEd
Principal
Dearborn Academy
Newton, MA
Title: Evaluating Treatment Resistant Mental Illness Through the Lens of Immune-Mediated Neuropsychiatric Disorders in a School-Based Setting
Sheilah M. Gauch is the Principal of Dearborn Academy, a therapeutic day school that services students with social/emotional and learning needs. She is also a Licensed Independent Clinical Social Worker and educator with over 20 years experience working with and advocating for students with complicated mental health needs. In addition to her work with children, Sheilah engages with caregivers, districts, and mental health professionals through consultation, training, and public speaking. She is founder and partner of Bridge Consultants, a group dedicated to diagnosing and treating treatment resistant mental illness and neuroimmune conditions. Highlights of Sheilah’s work include trainings on Caregiver/Parent Trauma, How to Support Students Through Understanding the Neuroscience of Anxiety, and Understanding PANS/PANDAS through Massachusetts Partnership For Youth as well as Georgetown Medical School, Boston College School of Social Work and the Federation for Children with Special Needs. Sheilah has two of her own children, whose mental health issues were ultimately diagnosed as PANS/PANDAS. Since this diagnosis, Sheilah has become an advocate for ensuring students receive the appropriate medical rule outs and subsequent treatment. She co-led the creation of the Massachusetts Coalition for PANS/PANDAS Legislation which successfully championed the passage of both an insurance mandate for the sickest children with this illness in the Commonwealth, as well as established a DPH PANS/PANDAS Advisory Council, where she serves as the co-chair. She is also a board member of the Alex Manfull Fund and helped establish a national legislative advocacy group, National Alliance for PANS/PANDAS Action (NAPPA). Sheilah received the 2020 Commonwealth Heroine Award for her work on the PANS/PANDAS Legislation Advisory Council as well as her leadership as the Chair of her local Special Education Parent Advisory Council.
Bio
Presentation
Earl Harley, MD
Pediatric Otolaryngologist and Professor of Otolaryngology
Georgetown University
Washington, DC
Title: The Role of Otolaryngology Research in PANDAS/PANS
Dr. Earl Harley Jr, MD graduated from the Howard University College of Medicine in 1971. He trained as a pediatrician and an otolaryngologist in the U.S. Navy with further pediatric otolaryngology fellowship training at the Children’s National Hospital in Washington, D.C. and the Massachusetts Eye and Ear Infirmary and Harvard University. He has practiced at Georgetown University and Medstar Georgetown University Hospital for 26 years where he is a professor of otolaryngology and pediatrics. He is a leading voice in the otolaryngology community for research and treatment of PANDAS/ PANS and Basal Ganglia Encephalitis.
Bio
Presentation
Brent Harris, MD, PhD
Director of Neuropathology, GUMC and MedStar Health
Georgetown University Medical Center
Washington, DC
Title: Studying Neuroimmune Disorders as a Neuropathologist
Dr. Harris is a tenured, academic physician-scientist neuropathologist with interests in neurological disease research, medical education, and neuropathology clinical service. His research focuses on the areas of neurodegeneration and CNS neoplasia. His primary interest is in understanding how mechanisms of neuroinflammation and glial-neuronal communication influence the pathophysiology of neurological diseases. As a neuropathologist and neuropharmacologist he also seeks to uncover novel targets for pharmacological intervention. As Director of Neuropathology and the Georgetown Brain Bank, Dr. Harris works collaboratively with other investigators interested in basic, translational, and clinical neuroscience research projects at GUMC and with other academic and industry partners. Dr. Harris also serves as a neuropathology consultant for the DOJ and the DC Office of the Chief Medical Examiner and as the Chair for the Neuropathology Committee for the College of American Pathologists.
Bio
Presentation
Pawel Kiela, DVM, PhD
Professor, Associate Director for Basic Science Research Research, Associate Professor, Immunobiology
University of Arizona
Tucson, AZ
Title: The Gut Brain Axis and Neuroinflammation: The Microbiome in PANS
Pawel Kiela received his DVM degree from the Warsaw University of Life Science in Poland, followed by a PhD at the same University and the Lund University in Sweden in the developmental physiology of the gastrointestinal tract. He completed his post-doctoral training in the laboratory of Fayez K. Ghishan, MD at the University of Arizona, where he currently holds the rank of Professor and PANDA Endowed Chair in Autoimmune Disease Research. His main research interest is autoimmune and autoinflammatory diseases, with particular focus on Crohn’s disease and ulcerative colitis, gut microbiota, mucosal immunology, and extraintestinal manifestations of intestinal inflammation, including bone metabolism and gut-brain axis.
Bio
Presentation
Herbert M. Lachman, MD
Professor, Department of Psychiatry and Behavioral Sciences
Albert Einstein College of Medicine
Bronx, New York
Title: PANS Candidate Genes Identified by Genome Sequencing
Herbert Lachman MD is a physician-scientist and professor in the Departments of Psychiatry, Medicine, Genetics, and Neuroscience at the Albert Einstein College of Medicine in New York. His primary research focus is the generation of models for neurodevelopmental disorders using induced pluripotent stem cell (iPSC) technology, which are either generated from patients or by engineering control lines using CRISPR-Cas9 gene editing. The Lachman lab differentiates iPSCs into monolayer neurons, neural progenitor cells, monolayer neurons, cerebral organoids, and microglia, which are then analyzed by a variety of molecular strategies. In the past year and a half, he has developed a strong interest in PANS, and is a co-author of a study led by Peter van der Spek describing the first candidate genes in the disorder.
Bio
Presentation
M. Elizabeth Latimer, MD
Pediatric Neurologist
Latimer Neurology Center
Washington, DC
Title: Video Case Reports of Clinical Presentation and Response to Treatment for PANS
M. Elizabeth Latimer, MD received her medical degree from Tufts University School of Medicine in Boston, Massachusetts. She completed her residencies in Pediatrics and Neurology at Walter Reed Army Medical Center in Washington, DC, with special certification in Child Neurology. She served as chief of the Child Neurology Division at Georgetown University Hospital in Washington, DC for five years, prior to practicing at Fairfax Hospital in Virginia. In 2000, Dr. Latimer opened her practice of Child and Adolescent Neurology in Bethesda, MD, where she provided treatment for autism, ADHD, migraines, and other neurological conditions. She’s currently practicing out of her office in Washington DC conveniently located in the heart of Georgetown. In addition to her general neurology and headache practice, Dr. Latimer specializes in caring for PANDAS patients, and cerebral palsy patients who require spasticity management. Throughout her years of working in the field of Child and Adolescent Neurology, Dr. Latimer has been involved with several health and non-profit organizations. She was a founding Board Member of the Catholic Coalition for Special Education, and served on the Board between 2004 and 2009.
Bio
Presentation
Juliette C. Madan, MD, MS
Associate Professor Pediatrics, Psychiatry, Epidemiology and Quantitative Biomedical Data Sciences
Geisel School of Medicine at
Dartmouth Hitchcock Medical Center - PING (Psychiatry Immunology and Neurology Group)
Lebanon, NH
Title: The Gut Brain Axis and Neuroinflammation: The Microbiome in PANS
Dr. Madan joined the Children’s Hospital at Dartmouth and Geisel School of Medicine faculty in 2008 in Pediatrics, and in 2016 received a joint appointment in Epidemiology as well as Quantitative Biomedical Data Sciences at Geisel. She joined the Department of Psychiatry in 2018 to expand her training in line with her research goals. Dr. Madan is the Clinical Director of the Dartmouth Children’s Environmental Health and Disease Prevention Research Center, and the focus of her research is on the developing microbiome in infants and children and the relationship to immune training and health outcomes that are alterable. She is a graduate of Brown University School of Medicine and trained in pediatrics followed by fellowship in neonatal-perinatal medicine at Tufts University, where she also completed a master’s degree in clinical and translational research. Dr. Madan is an expert in the developing microbiome in large infant cohorts examining the relationship between exposures, the microbiome, and health outcomes (infectious disease risk, respiratory outcomes and neurodevelopment), leading to publications in JAMA Pediatrics, Pediatrics, Nature Scientific Reports and highlighted in The New York Times, NPR and on Science Friday. She is the founding co-director of the Psychiatry Immunology and Neurology Group at Dartmouth begun in 2019, which aims to provide clinical care and translational research initiatives in infection and inflammation mediated neuropsychiatric illnesses in children and young adults. Dr. Madan’s lab is now focused on the relationship between the gut microbiome and neurodevelopmental and neuropsychiatric outcomes and interventions such as nutritional, probiotic regimens and fecal transplant.
Bio
Presentation
Melissa McCormack, MD, PhD
General Practice Pediatrician
Private Medical Practice
Winchester, MA
Title: Evaluating Treatment Resistant Mental Illness Through the Lens of Immune-Mediated Neuropsychiatric Disorders in a School-Based Setting
Dr. Melissa McCormack is a general pediatrician practicing in Winchester, MA. She received her medical degree from Warren Alpert Medical School of Brown University and a Ph.D. in Medical Science from the Division of Artificial Organs, Biomaterials, and Cellular Technology at Brown University, with a focus on nerve regeneration. She completed her general pediatric training at Children’s Hospital of Philadelphia and MassGeneral Hospital for Children. Dr. McCormack also conducted postdoctoral research in the fields of neuroscience and immunology at the University of California San Diego, University of Pennsylvania, and Massachusetts General Hospital. Her primary work experience over the past 22 years has been in primary care pediatrics. Additionally, Dr. McCormack has worked extensively in neonatal medicine and developmental/behavioral pediatrics due to her longstanding interest in neurodevelopment. She believes strongly in supporting the continued evolution of medicine to uncover the pathophysiologic basis for newly discovered and previously misunderstood biological disorders in order to optimally treat human illness. This philosophy has lead her into the field of neuroimmune disorders, where her role as both healer and advocate for her patients inspires her daily.
Bio
Presentation
Richard P. Morse, MD
Chief of Pediatric Neurology, Children’s Hospital at,
Dartmouth Hitchcock Medical Center PING (Psychiatry Immunology and Neurology Group)
Lebanon, NH
Title: At the Interface of Brain and Mind: Towards a Synthetic Understanding of PANS
Richard Morse, MD is a Pediatric Neurologist/Epileptologist currently serving as Section Chief of Pediatric Neurology at The Children’s Hospital at Dartmouth/Dartmouth-Hitchcock Medical Center. He is a professor of Neurology and Pediatrics and serves on the admissions committee of The Geisel School of Medicine at Dartmouth. He received his MD through Dartmouth Medical School and training in Pediatric Neurology at Tufts in Boston. He served in the USAF as Chief of Pediatric Neurology at Wilford Hall Medical Center, then worked at Duke University Medical Center where he completed a fellowship in neurophysiology and epilepsy. Richard has long had an interest in PANDAS/PANS and, together with Dr. Juliette Madan, Child Psychiatry, helped start the research-based PING (Psychiatry, Immunology, Neurology Group) at Dartmouth Health. He is pleased to be focusing his efforts in the arena of clinical care and research initiatives in PANS, and on raising awareness of this disease entity among medical students and residents as well as fellow physicians.
Bio
Presentation
Peter J. van der Spek, Prof. dr. Ing.
Professor of Clinical Bioinformatics
Department of Pathology
Erasmus University Medical Center

Rotterdam, NL
Title: PANS Candidate Genes Identified by Genome Sequencing
Prof. dr. Ing. Peter J. van der Spek is a molecular geneticist at the department of Pathology & Clinical Bioinformatics of the Erasmus University Medical Center, Erasmus MC, Rotterdam, The Netherlands. He began his training in Human Genetics in 1989 at the Erasmus MC Rotterdam and graduated in 1996. Van der Spek explored the Human Genome for candidate drug targets, for pharmaceutical companies such as Akzo-Nobel/Organon and Johnson & Johnson/Janssen Pharmaceutica. In 2003 Peter J. van der Spek was appointed as full professor and head of the department of Bioinformatics at the Erasmus University Rotterdam. His fundamental, epidemiologic and diagnostic research focuses on five main areas: 1) Cancer predisposition genes with a special interest in DNA repair pathways 2) Cardiovascular relevant genetic mutations such as channelopathies. 3) Neurological development and genetic neuro-degenerative diseases characterized by chronic fatigue (ME/CFS) linked to mitochondrial DNA 4) Genetics of auto-immune and auto-inflammatory disorders with a focus on genetic primary immune deficiencies such as SCID. 5) Last but not least, rare pediatric genetic disorders (including PANS and PANDAS) with unknown causal molecular mutations are studied by applying state of the art Next Generation Sequencing technologies and OMICS techniques. Professor van der Spek has published many original papers on these topics. His bioinformatics expertise has opened the door towards understanding of the molecular pathways relevant to diagnose and develop therapeutic solutions to treat those diseases. He is closely involved in the development of innovative translational molecular personalized medicine strategies in many international projects.
Bio
Presentation


See our 2022 program guide for the schedule of presentations delivered at the symposium… Click here to open the 2022 Symposium Program Guide



TAMF 2022 PANDAS/PANS Symposium Images

Praise from those who attended our 2022 Symposium:

Informative, stimulating and well-organized!

Having attended many conferences that I thought were good, this was transcendent given the expertise of the speakers, their candor and their passion. 

I feel very fortunate to have been one of the few who could be there on Saturday. It was energizing and so hopeful to be with other like minded people who are not afraid to search for the truth. I left with so much hope and inspiration.