Upcoming Free Opportunities for Families with PANS and PANDAS Specialists

Q&A with Dr. Jenny Frankovich and Dr. YuJuan (Julia) Zhang on PANS, PANDAS, and related immunopsychiatric conditions

April 2, 2024. 4:00 pm PT, 5:00 pm MT, 6:00 pm CT, 7:00 pm ET

Join us for a free one-hour Q&A for parents and patients with Dr. Jennifer Frankovich from the Stanford PANS Clinic and Dr. YuJuan (Julia) Zhang from Tufts Medical Center hosted by Neuroimmune Foundation director, Anna Conkey. Parents may submit their question for Dr. Frankovich and Dr. Zhang at the time of their Zoom registration via Zoom.

Dr. Frankovich and Dr. Zhang are rheumatologists. Please note that they can *only* answer general questions related to PANS and cannot answer child-specific questions.

Questions must be submitted via Zoom at the time of registration and will not be accepted via email.

Jennifer Frankovich, MD

Clinical Associate Professor, Stanford

YuJuan (Julia) Zhang

Pediatric Rheumatologist,
Tufts Medical Center

Anna Conkey

Neuroimmune Foundation, Executive Director and Founder

A Free Webinar and Q&A to Review Octapharma’s Superiority Study To Compare The Effect of IVIG (Panzyga) Versus Placebo in Patients with PANS/PANDAS

April 25, 2024. 3:00 pm PT, 4:00 pm MT, 5:00 pm CT, 6:00 pm ET

Join us on April 25th to learn more about the phase III trial of IVIG in patients with Pediatric Acute-onset Neuropsychiatric Syndrome (PANS/PANDAS).

Huub Kreuwel PhD is the VP of scientific and medical affairs of Octapharma USA. He oversees a team of medical doctors, nurses and pharmacists to provide medical education to patients and health care practitioners. He received his PhD in immunology from the Free University of Amsterdam in collaboration with The Scripps Research Institute, La Jolla. He has published research in Immunity, Journal of Immunology, Immunotherapy and Current Opinion in Immunology.

Snehal Udavat is the Associate Director of Clinical operations at Octapharma USA. He oversees a team of clinical researchers and manages clinical trials within the Immunology and Critical Care Therapeutic Areas. He has been working with Octapharma for the past 10 years and has been in the industry for the past 15 years.

Huub Kreuwel, PhD

Vice President Scientific and Medical Affairs, Octapharma USA, Inc.

Snehal Udavat

Associate Director, Clinical Operations, Octapharma USA, Inc.

Anna Conkey

Neuroimmune Foundation, Executive Director and Founder

Become a member to access exclusive recordings and live events

Upcoming Live Events

These live events are open to members only.

Join us for a live, face to face, hour long Q&A for members with Dr. Jennifer Frankovich from the Stanford PANS Clinic hosted by Neuroimmune Foundation director, Anna Conkey.

Neuroimmune Foundation hosts quarterly members-only Q&As on topics related to PANS, PANDAS, neuroimmune, and immunopsychiatry conditions.

This live event (no recording) will be Tuesday June 4th, 2024 at 4:00 pm PT, 5:00 MT, 6:00 CT, 7:00 ET.

  • Members may submit their questions in advance via email. In order to have your question submitted ahead of time, please email no later than 12:00 PM CT on Monday June 3rd. You may join us on camera if you wish. Please note when you submit your question if you’d like to ask it live or have us ask anonymously. If you do not state your preference, we will ask the question anonymously for you.
  • Please note that we are not recording this to protect the privacy of members, however, please be mindful of the way you phrase questions on the Q&A so as to only divulge information you feel comfortable sharing with the group.
  • Please note that panelists cannot give medical advice. By participating you agree you understand you are not receiving medical advice but rather insight as to how patients in their cohort have responded to various treatments.
  • Please do *not* ask patient specific questions. For instance: “How do you decide which antibiotic to use?” is fine but “What antibiotic would you suggest for an eight year old with ASO titers of 738 and positive Mycoplasma IgM?” would not be.
  • Failure to protect the privacy of other group members will result in revocation of membership. Please do not share any identifying details of any other parent’s questions with anyone outside the Q&A. Thank you for your cooperation in creating a safe space for families.

Jennifer Frankovich, MD

Clinical Associate Professor, Stanford

Anna Conkey

Neuroimmune Foundation, Executive Director and Founder

Webinars Available Exclusively to Members

Sarosh Irani, FRCP, DPhil, FEAN

The Immunology Underlying Autoantibody Associated CNS Diseases
Dr. Sarosh Irani is a consultant neurologist and clinician-scientist with clinical and laboratory experiences in the field of autoantibody mediated diseases of the nervous system, in… Read More

Chris Pittenger, MD, PhD

Antibodies in Children with PANDAS Bind to and Inhibit Specific Inter­neurons in the Basal Ganglia
Chris Pittenger earned his MD and Ph.D. degrees from Columbia University, where his graduate work was done with Nobel Prize recipient Eric Kandel… Read More

Wei Zhao, MD, PhD

Plasmapheresis in Treatment of PANS
Dr. Wei Zhao received his medical degree from Wenzhou Medical University in China. He received his PhD in Immunology from West Virginia University. He then completed his pediatric residency at… Read More

Michael Wilson, MD

Autoimmune and Infectious Encephalitis
Dr. Michael Wilson is a Debbie and Andy Rachleff Distinguished Professor of Neurology and an Associate Professor in the UCSF Department of Neurology and Weill Institute of… Read More

Chris Bartley, MD, PhD

Autoantibody Discovery in Psychotic Spectrum Disorders
Dr. Christopher Bartley is the Chief of the Translational Immunopsychiatry Unit, NIMH, NIH*… Read More

Hayley Gans, MD

The Link Between Infectious Diseases and Neuroimmune Disorders
Hayley Gans is a Professor of Pediatrics at Stanford University Medical Center. She spends her clinical time on the Pediatric Infectious Diseases service… Read More

Erica Guetzlaff, PharmD

Understanding the Medications Used in PANS and PANDAS
Dr. Erica Guetzlaff is a pharmacist with 14 years of experience in a variety of settings, including retail, clinical and administrative (insurance) pharmacy… Read More

Madeleine Cunningham, PhD

Update on The Cunningham Panel and Related Research
Dr Cunningham received her PhD in Microbiology and Immunology in1973 at University of Tennessee Center for the Health Sciences in Memphis, TN… Read More

Shannon Delaney, MD

Neuropsychiatric Illness Associated with Lyme and Tick-Borne Illness
Dr. Shannon Delaney is a neuropsychiatrist at Columbia University Irving Medical Center who is co-director with Dr. Fallon of the Cohen Center for Health and Recovery from Lyme and Tick borne… Read More

Richard Frye, MD, PhD

Q&A for Families with Pediatric Neurologist, Dr. Richard Frye
Dr. Richard Frye is a Child Neurologist with expertise in neurodevelopmental and neurometabolic disorders. He is the Chief of the Division of Neurodevelopmental Disorders at. Phoenix Children’s Hospital… Read More

Tina Motley

EMDR 101 for Families of Children and Young Adults with PANS/PANDAS/Encephalitis
Read More

Beth Maloney, Esq

Protecting Your Child: Legal Issues Arising for PANS/PANDAS Families and How to Advocate Without Increasing the Risk
Beth Alison Maloney is an attorney and the author of Saving Sammy: Curing the Boy Who Caught OCD and Childhood Interrupted: The Complete Guide to PANDAS and PANS… Read More

James Adams, PhD

Overview of Microbiota Transplant for Autism Studies
James B. Adams, Ph.D., is the Director of the Autism/Asperger’s Research Program at Arizona State University. His research focuses on the medical causes of autism and how to treat and prevent it… Read More

Robert Yolken, MD

Neuropsychiatric Consequences of Viral Infections – Focus on SARS-CoV-2 and Other Coronaviruses
Dr. Robert H. Yolken is the Theodore and Vada Stanley Distinguished Professor of Neurovirology in the Department of Pediatrics at the Johns Hopkins University School of Medicine… Read More

Sam Pleasure, MD, PhD & Claire Johns, MD

Neuropsychiatric Presentation in Pediatric COVID-19 Patients Associated with Anti-Neural Autoantibodies
Dr. Sam Pleasure is the Glenn W. Johnson, Jr. Memorial Endowed Chair in Neurology at UCSF. Dr. Pleasure is a neurologist who specializes in caring for patients with multiple sclerosis… Read More

Lawrence Steinman, MD

Does Molecular Mimicry Explain Epidemiology Linking EBV & MS? …
Dr. Lawrence Steinman is Professor of Neurology, Neurological Sciences and Pediatrics at Stanford University. He was Chair of the Stanford Program in Immunology from 2001… Read More

Richard Frye, MD, PhD

Metabolic and Mitochondrial Considerations in Neuropsychiatric Deteriorations
Dr. Richard Frye is a Child Neurologist with expertise in neurodevelopmental and neurometabolic disorders. He is the Chief of the Division of Neurodevelopmental Disorders at. Phoenix Children’s Hospital… Read More

Eileen Devine, LCSW

Recognizing and Addressing Trauma in the Sibling Experience
Eileen is a certified facilitator in the teaching and application of the neurobehavioral model and has also completed Tier 1 training in Think:Kids Collaborative Problem Solving… Read More

Hrissanthi (Chris) Ikonomidou, MD, PhD

A Neurologist’s Perspective on PANS: Case Studies
Dr. Hrissanthi (Chris) Ikonomidou is a Child Neurologist and physician researcher with expertise in neurodegenerative and neurodevelopmental disorders… Read More

Jennifer Frankovich, MD

Rheumatology & Psychiatry – What We Can Learn From Overlapping Conditions
Dr. Frankovich is an Associate Clinical Professor in the Department of Pediatrics, Division of Allergy, Immunology Rheumatology (AIR) at Stanford University/Lucile… Read More

Emily Severance, PhD

Autoimmune Phenotypes in Psychiatric Disorders
Dr. Emily Severance is an Assistant Professor of Pediatrics at the Johns Hopkins University School of Medicine. She is a member of the Stanley Division of Developmental Neurovirology… Read More

Margo Thienemann, MD

PTSD in Parents of Children with PANS
Margo Thienemann, MD is a clinical professor of psychiatry and behavioral sciences at Stanford. Thienemann is the lead psychiatrist of the Packard Children’s PANS clinic, the first in the country exclusively devoted to PANS… Read More

Cheryl Standing, MD

PANS Cases: Through the Eyes of a Pediatrician
Dr. Cheryl Standing is a pediatrician at Greater Regional Health in Creston, Iowa. She completed a pediatric residency at Strong Memorial Hospital and fellowships in pediatric emergency… Read More

Erin Masterson, PhD, MPH

Preliminary Findings from the International PANS Registry Epidemiology Study
Erin E. Masterson, PhD, MPH is an Epidemiologist at the University of Washington in Seattle. She has partnered with the Pediatric Research & Advocacy Initiative.. Read More

Theresa Willett, MD, PhD

Clues from the Clinical Exam and PANS/PANDAS for the Busy Primary Care Provider
Dr. Theresa Willett is a general pediatrician and current medical director of the Stanford PANS/Immune Behavioral Health Clinic. She pursued her MD-PhD at Tufts University in Boston, where… Read More

Ruy Carrasco, MD

Clinical Workup and Treatment of Rheumatological Diseases That Have Psychiatric Co-Morbidities
Healthcare Executive with over 15 years’ experience in nationally recognized rheumatology programs for superior patient care, research and patient satisfaction… Read More

Andrew Baumel, MD

A Pediatrician’s Perspective on Treating Mild to Moderate PANS
Dr. Baumel is a graduate of Yale University and the University of Pennsylvania School of Medicine. His pediatric internship and residency were done at Childrens’s Memorial Hospital in Chicago… Read More

Naresha Saligrama, MD

T Cells and Neurodegeneration
Dr. Saligrama is an Assistant Professor in the Departments of Neurology and Pathology and Immunology at Washington University School of Medicine in St. Louis… Read More

Elizabeth Mellins, MD

Monocyte Research in PANS
Dr. Elizabeth Mellins is a Pediatric Rheumatologist and a Molecular Immunologist at Stanford University School of Medicine. She has focused her career on laboratory-based research on… Read More

Cynthia Kapphahn, MD, MPH

Disordered Eating in PANS
Dr. Cynthia Kapphahn is a Clinical Professor in the Division of Adolescent Medicine at Stanford University School of Medicine. She is Medical Director, Eating Disorders Program of Lucile… Read More

Sean Pittock, MD

GAD65 Neurological Autoimmunity
Dr. Sean Pittock is Professor of Neurology, Director of the Neuroimmunology Laboratory and the Center for MS and Autoimmune Neurology at the Mayo Clinic. His expertise is in the… Read More

Jill Hollenbach, PhD, MPH

Immunogenetic Variation in PANS and Neuroinflammatory Disease
Jill Hollenbach is Associate Professor in the Department of Neurology and Department of Epidemiology and Biostatistics at the University of California, San Francisco. She was… Read More

Dritan Agalliu, PhD

The Role of the Adaptive Immunity and Genetic Risk Factors in Vas­cular and Neuronal Dys­function in Post Infectious Autoimmune Encephalitis
Research in Dr. Dritan Agalliu’s laboratory is focused on understanding the cellular and molecular mechanisms that regulate formation of the blood-brain barrier in the central nervous system… Read More

Cynthia Wang, MD

Neuropsychiatric Symptoms in Pediatric Multiple Sclerosis
Dr. Cynthia Wang received her medical degree from University of Texas Southwestern Medical Center in Dallas, Texas and completed a pediatric neurology residency at Mott Children’s Hospital… Read More

Harumi Jyonouchi, MD

A Possible Role of Immune Mediated Inflammation in Autism Spectrum Disorders
Harumi Jyonouchi, MD received her medical training at the Yokohama City University School of Medicine, Yokohama, Japan… Read More

Theresa Willett, MD, PhD

PANS/PANDAS for the Busy Primary Care Provider
Dr. Theresa Willett is a general pediatrician and current medical director of the Stanford PANS/Immune Behavioral Health Clinic. She pursued her MD-PhD at Tufts University in Boston, where… Read More

Kiki Chang, MD

Review of Expert Consensus Treatment Guidelines for Youth with PANS
Dr. Kiki Chang is a child psychiatrist with over 22 years of experience in working with younger children, adolescents, adults and families. Formerly, Dr. Chang was Professor of Psychiatry and Behavioral… Read More

Richard Frye, MD, PhD

Understanding the Overlap of PANS and Autism – An Overview of Research on Antineuronal Antibodies in Patients with Autism
Dr. Richard Frye is a Child Neurologist with expertise in neurodevelopmental and neurometabolic disorders… Read More

Jessica Schaffer

Nervous System Know-How for Parents: How to Harness the Wisdom of Your Body to Navigate Through Challenging Times
Read More

Samuel Pleasure, MD, PhD & Michael Wilson, MD

Infectious and Autoimmune Causes of Encephalitis
Dr. Sam Pleasure is the Glenn W. Johnson, Jr. Memorial Endowed Chair in Neurology at UCSF. Michael Wilson, MD is a Debbie and Andy Rachleff Distinguished Professor of Neurology and an Associate Professor in the UCSF Department of Neurology… Read More

Margo Thienemann, MD and Richard Frye, MD, PhD

PANS and PANDAS: A Review of the Research and Current Treatments
Dr. Margo Thienemann is a clinical professor of psychiatry and behavioral sciences at Stanford. Dr. Richard Frye is a Child Neurologist with expertise in neurodevelopmental and neurometabolic disorders. … Read More
Disclaimer

The opinions expressed by the expert hosts should not be interpreted as medical advice pertaining to a specific child’s case, but rather simply reflect the experience of these expert clinicians in treating similar cases or encountering similar situations in the past. Each individual’s case is unique and the expert hosts do not have the ability to examine the child nor confirm the accuracy of the clinical information, thus cannot and will not make specific treatment recommendations on any child’s case but instead provide more general information based upon clinical experience.

Webinars by Eileen Devine

Eileen Devine.
The recordings by Eileen Devine below are free and accessible on demand.

Eileen is a therapist with a dozen years of clinical experience who works with parents of children with special healthcare needs. She is an instructor for the Post-Master’s Certificate in Adoption and Foster Family Therapy through Portland State University’s Child Welfare Partnership where she teaches other clinicians how to use the neurobehavioral model in their work with families. She also has the great fortune of facilitating dozens of other trainings and workshops for parents and clinicians each year on a variety of topics that are relevant to the experience of being a parent of a child with a neurobehavioral condition. In addition to this professional experience, Eileen has the lived experience of parenting a child with significant neurobehavioral challenges. Her goal is to support parents and caregivers of children with these frequently understood brain-based conditions on their unique parenting journey so that they, their children, and their family can thrive. Eileen has become a top therapist working with families of children exhibiting PANDAS symptoms. While PANS treatment and PANDAS treatment questions are best for our PANS medical specialists, Eileen is a pro at helping families navigate the confusing and challenging behavioral symptoms of inflammatory brain disorders. Eileen helps families navigate PANDAS symptoms in her webinars.

Also visit Eileen’s column for parents of children with neuroimmune disorders to anonymously ask their pressing questions.

Recognizing and Addressing Trauma in the Neuroimmune Parent Experience

Research tells us unequivocally that when an individual experiences trauma, it takes a significant toll on their spiritual, emotional, and physical well-being. What happens then, to a parent who experiences repeated trauma as a result of parenting a child who lives with a neuroimmune illness and challenging behavioral symptoms? What can parents in this unique position do to protect against the impact of the trauma they endure while also parenting their child in the way they require? This webinar will discuss signs and symptoms of trauma as it relates to the parent experience. It will highlight relational stress, (leading to) compassion fatigue, (and then leading to) burnout so that parents can recognize when this is presents in their life and can take necessary support to address and heal from it. And finally, this webinar will outline the importance of nervous system health and stability and the small, but meaningful steps that can be taken each day to build resiliency and heal from the trauma endured. With Therapist Eileen Devine.

Executive Function in Individuals with Neuroimmune Conditions

Parenting children with neuroimmune conditions is incredibly complex. This webinar encourages us to parent through a brain-based lens and understand how our child’s unique brain function is directly connected to their challenging behaviors, allowing a new set of possibilities on how we can best support them to begin to emerge. With Therapist Eileen Devine.

Our Greatest Parenting Tool: Self Regulation

As a parent, our greatest and most effective tool is our ability to self-regulate. When we have the ability to regulate our own emotional state, we can then co-regulate with our child, helping them find calm and equilibrium when they are experiencing their own big emotions. Contrary to what many think, this is not simply a psychological or emotional process underway, but is one that resides deep within our nervous system and our child’s nervous system. In this webinar, we will talk about what is meant by self-regulation and co-regulation and why it is important for us to be cognizant of these two elements as parent. We will talk about how this might look different when parenting a child with a neuroimmune illness and strategies for increasing our ability to stay regulated when our child is in the midst of incredibly challenging behaviors. No matter how little or how much we know about this topic, there is always room to grow in our understanding of ourselves from this nervous system lens, so we hope you’ll join us for this important discussion. With Therapist Eileen Devine.

Values, Behavior, and Our Emotional Response: Parenting Children with Neuroimmune Disorders

What happens when we are parenting a child with neurobehavioral challenges whose behaviors clash daily with our deeply held beliefs? How do we understand the source of those visceral, instantaneous reactions to behaviors we have as parents and respond to our child from a neurobehavioral perspective? Join us as we learn to recognize when our values are getting in the way of us parenting from a neurobehavioral, brain-based approach. Learn to slow down reactions to challenging behaviors, the role of grief and loss in the process, and how to use the neurobehavioral approach. With Therapist Eileen Devine.

Managing the Toll of Caregiver Trauma and Building Resiliency in Families with Children with Special Healthcare Needs

Join us as we delve into the topics of relational stress, caregiver burnout, compassion fatigue and the impact on our physical and mental well-being, relationships, and family systems. This webinar led by therapist Eileen Devine will look at these topics through the unique lens of caring for a child with significant health challenges and how parents can take measurable and concrete steps to build resiliency within themselves and within our parenting partnerships. With Therapist Eileen Devine.

Navigating the Dynamics of Sibling Relationships in Families of Children with Neuroimmune Disorders

When you have a child that requires constant supervision and care, howcan you balance this with the needs of your other children? How do you support your other children when they have experienced the trauma oftheir sibling’s meltdowns, rages, or hospitalizations? How do you help them understand the illness without feeling as if you are creating a double standard or excuses for unacceptable behavior? And how do you balance the needs of all your children when one of them requires everything you have to give? This webinar also features an extended Q&A. With Therapist Eileen Devine.

Understanding and Applying a Brain Based Approach to Parenting Children with Neuroimmune Disorders

​Join us as we learn how parents and caregivers can provide support for children with neuroimmune disorders from a neurobehavioral lens, the connection between brain function and (challenging) behavioral symptoms, how our values and beliefs factor into our ability to support from a neurobehavioral perspective, and how to create accommodations to reduce the behavioral symptoms and build a stronger connection in the process. With Therapist Eileen Devine.

Back to School: Supporting Children with Neuroimmune Disorders in the Classroom

​Steeped in neuroscience, yet easy to understand through a neurobehavioral lens, this webinar will clearly articulate why traditional classroom behavior management systems don’t work for children with neuroimmune disorders and what children can do instead. This webinar is for parents as well as teachers. With Therapist Eileen Devine.

Educational Webinars

Advocating for Your Child in an Educational Setting

Shara Virlan, educator, reading specialist, and parent of a child with PANDAS presents on being an advocate for your child with a neuroimmune disorder, when and how to request a special education referral, the difference between an IEP and 504 plan, and accommodations and modifications that may be helpful for your child. (30 minutes. Free)

PANS/PANDAS in the Classroom:
Information for Educators

Shara Virlan, educator, reading specialist, and parent of a child with PANDAS presents Information For Educators, a free 35 minute presentation for educators on working with children with PANS and PANDAS in the classroom.