attendees at 2019 AE Symposium

The Bridge Between Neurology & Psychiatry

2019 Symposium, New York City

THE STORY BEHIND THE EVENT

Imagine the horror of realizing that the symptoms you are experiencing are actually a relapse of your AE. You contact your physician who advises you to go to the Emergency Department of the local hospital for treatment with steroids. Upon arrival the ED staff makes the determination that your problem is psychiatric rather than physical. Instead of treating you with steroids, you are committed to the nearest mental facility where you are given the wrong medications; medications that only make your symptoms worse. Finally, after a week of improper treatment, your physician is able to get you released; but that week is likely to remain with you a lifetime. The scenario is true, and sadly is one that people we encounter in our various support groups have experienced. Too often, patients who present with psychiatric symptoms are misdiagnosed due to lack of disease awareness and effective differential diagnostic protocols. Early diagnosis and prompt immune suppressive and/or immune modulating treatments are critically important when providing care for patients who present with symptoms of AE. Without proper immediate care, the patient may suffer permanent brain damage or loss of life. And so it was, that in early 2018, a group of non-profit organizations based in the USA and Canada, having similar missions and mandates to raise awareness and educate the medical community and the pubic about the different forms of autoimmune encephalitis (AE) and the treatments that are available, joined forces to begin the journey of planning this symposium.

SPEAKERS

Neurology

John Hopkins

Neurology

ICREA-IDIBAPS

Neurology

Erasmus MC

Psychiatry

Weill Cornell

Psychiatry

Columbia

Immunology

St. Peter's Hospital

Neurology

Weill Cornell

Neurology/Psychiatry

UT Southwestern

Neurology/Psychiatry

Weill Cornell

DR. ARUN VENKATESAN Autoimmune encephalitis: Costs, burden, and challenges Dr. Arun Venkatesan is an Associate Professor at the Johns Hopkins University School of Medicine, in the Department of Neurology, Division of Neuroimmunology and Neuroinfectious Diseases where he also serves as the Director of the John’s Hopkins Encephalitis Center. His clinical and research activities focus on immunological/inflammatory and infectious diseases that affect the nervous system. His work is supported by the National Institutes of Health and Maryland Stem Cell Research Fund.

DR. JOSEP DALMAU Antibody-mediated mechanisms in autoimmune encephalitis Dr. Josep Dalmau received his MD and PhD from the Universitat Autònoma de Barcelona, and trained in Neuro-oncology at Memorial Sloan-Kettering Cancer Center, New York, after which he joined the faculty. In 2002 he moved to the University of Pennsylvania (UPenn) where he was Professor of Neurology. He is currently Professor at the Catalan Institution for Research and Advanced Studies (ICREA)- IDIBAPS, University of Barcelona, and Adjunct Professor of Neurology at UPenn. Dr. Dalmau’s research is focused on a new category of immune-mediated diseases against synaptic receptors that result in prominent neurologic and psychiatric syndromes. Dr. Dalmau is the recipient of numerous awards; he is a member of the National Academy of Medicine and many other scientific societies and serves as Editor-in-Chief of Neurology: Neuroimmunology and Neuroinflammation.

DR. JANNA GORDON-ELLIOTT The patient with AE— caught between the services Dr. Gordon-Elliott is an attending psychiatrist and Assistant Clinical Professor of Psychiatry at New York-Presbyterian Hospital/Weill Cornell Medical Center. Her current clinical work focuses on mental health and resilience in young adults. Dr. Gordon-Elliott participates as a reviewer for medical journals and has been the recipient of research and teaching awards.

DR. MAARTEN TITULAER - Treatment and long-term outcome of autoimmune encephalitis Dr. Titulaer is Assistant Professor of Neurology at Erasmus Research Center, Rotterdam, Netherlands. He combines clinical work with translational research. He has previously worked with Dr. Josep Dalmau at the University of Pennsylvania and Barcelona to study anti-NMDA receptor and anti-LGI1 encephalitis. Dr. Titulaer is one of the forefront researchers and speakers for autoimmune encephalitis.

DR. HARUMI JYONOUCHI - Immunomodulating agents used for treating AE – mechanisms of action and potential side effects Dr. Jyonouchi is an immunologist with experience treating patients with autoimmune encephalitis. She is an associate professor at Rutgers School of Medicine and works with St. Peter’s Healthcare System and Robert Wood Johnson University Hospital. She has many peer-reviewed publications.

DR. SANDER MARKX - Neuronal autoimmunity and mental illness: assessment and treatment of autoimmune-associated psychosis Dr. Markx, a psychiatrist at Columbia University, studies the genetics of psychiatric disorders such as schizophrenia. He and his team have experience with anti-NMDA Receptor Encephalitis which is associated with prominent psychiatric symptoms at onset and could give valuable insight into patients with psychosis.

DR. SILKY PAHLAJANI - Autoimmune encephalitis: the diagnostic conundrum— to test or not to test Dr. Pahlajani is board certified in Psychiatry and Neurology and serves as an Assistant Professor of Behavioral Neurology and Neuropsychiatry at Weill Cornell Medical College, and an Assistant Attending at New York-Presbyterian Hospital/Weill Cornell Medical Center. Dr. Pahlajani specializes in treating patients with Alzheimer’s disease, rapidly progressive dementias, various types of autoimmune encephalitis and traumatic brain injury.

DR. ROBERT WEIR - Building the bridge between neurology and psychiatry Dr. Weir is a fourth-year resident and pioneer of the NeurologyPsychiatry Combined Residency Program at the University of Texas Southwestern. He proposed the concept of a combined residency program and wrote the curriculum, in the process creating the application eventually approved by the American Board of Psychiatry and Neurology.

DR. MATTHEW FINK - The convergence of neurology and psychiatry – it’s the brain, stupid! Dr. Fink is the Louis and Gertrude Professor and Chairman of the Department of Neurology at Weill Cornell Medical College, and Neurologist-in-Chief at New York Presbyterian Hospital / Weill Cornell Medical Center. He has been involved in the education and training of students, residents and fellows in the field of stroke and critical care neurology, and is an active participant in clinical research within this field.

WANDA OPDYKE Wanda is the mother to three boys ages 25, 21, and 14, the middle of whom has been diagnosed with seronegative autoimmune encephalitis. She is a relentless warrior, having fought over thirteen years for an accurate diagnosis and aggressive treatment for him. She works full time in specialty logistics, catering to the time and temperature sensitive shipping needs of biotech/pharma companies conducting cutting edge clinical trials. She hopes one day her personal and professional life will intersect, arriving at a cure for this dreaded disease.

JAMES BALDINI An educator for 20 years, Jim is also a primary caregiver to his daughter Derya, who was diagnosed with NMDAR encephalitis and Seronegative encephalitis. Derya, a college student with a promising future, experienced a sudden decline in health with psychiatric features. Admitted to a psychiatric facility, she was cut off from family for months and given psychotropic medications. She now has a medical team who works very hard to give her the best treatments, however Derya continues to require 24 hour care. Jim and his wife Samime have two children. They look forward to the day their daughter comes back to them.

DR. KAREN McKINLEY Dr. McKinley, a licensed Clinical Social Worker, Marriage and Family Therapist, Substance Abuse Treatment Practitioner, and Assistant Professor in Pediatrics at Eastern Virginia Medical School, also cared and advocated for her sister Laura, who struggled with Hashimoto’s encephalopathy. For 7 years she took her to multiple neurologists, endocrinologists, and a psychiatrist. Unfortunately, they could only chase her psychiatric symptoms with seizure and psychiatric medications with little success. Despite all Dr. McKinley’s efforts to advocate for her sister, she was unable to protect her when two memory care centers decided to change her diagnosis, ultimately leading to her death.

CAREGIVERS

James Baldini

Caregiver

Wanda Opdyke

Caregiver

Dr. Karen McKinley

Caregiver

The Hashimoto’s Encephalopathy SREAT Alliance (“HESA”) is a 501(c)(3) nonprofit organization formed in 2012 to educate medical professionals and the public about Hashimoto’s Encephalopathy SREAT, a form of autoimmune encephalopathy, and to help empower and support patients. In December of 2013, HESA published its first book, “Understanding Hashimoto’s Encephalopathy: A Guide for Patients, Families and Caregivers.” That was followed in April of 2017 with an expanded second edition.

Encephalitis Global is a USA non-profit organization sharing information, resources and hope. Since 2007, Encephalitis Global’s Inspire Discussion Forum has hosted communication and fellowship between survivors and caregivers from more than 90 countries. Encephalitis Global is proud to host an annual FACES (Friends And Caregivers, Encephalitis Survivors) Encephalitis Conference.

The AE Alliance strives to educate physicians in evidence-based best practices for the diagnosis and treatment of AE. We believe that successful patient care requires a collaborative, interdisciplinary approach. We endeavor to establish a supportive community of patients, families and caregivers, so that no one faces autoimmune encephalitis alone, and we work to facilitate scientific research into the causes of AE and its treatment.

The Anti NMDA Receptor Encephalitis Foundation Through its network of caregivers, patients, physicians and healthcare providers, the Anti-NMDA Receptor Encephalitis Foundation, Inc, a Canada Revenue Agency registered charity strives to: (1) raise awareness of the disorder through education, (2) promote clinical and basic science research concerning the risk factors and disease pathogenesis, (3) promote the diagnosis and treatment of the disease, (4) provide an ongoing forum for patients and their caregivers and (5) provide a clearinghouse of published information for the professional, caregiver, parents, and patients.

OCTAPHARMA was founded in 1983 on the fundamental principle of improving the lives of patients. In the words of Wolfgang Marguerre, Chairman of Octapharma Group, “The foundation of our identity is our patient-oriented corporate culture. We aim to increase our product portfolio to access the global market; to enter the recombinant business successfully; to increase plasma availability and throughput; to nurture a healthy organization with proud and talented employees and to continue to have open and transparent communication. These strategic pillars, we believe, will lead to further successes and profitable organic growth. These core elements define our future resource investments and continue to focus our internal and external activities.”

EUROIMMUN US, INC., a subsidiary of EUROIMMUN, is a world leader in the field of medical diagnostics. EUROIMMUN established itself as an industry innovator with its unique IFA BIOCHIP Mosaic technology and has successfully introduced new technologies such as ELISA, Western & Immunoblot assays since its inception in 1987. The company’s global success is attributed to its strategic product development in which designer antigens, as well as patented and licensed technologies, play an important role. EUROIMMUN is consistently expanding its product offerings with new assays to aid in the detection of antibodies associated with autoimmune diseases, infectious diseases, and allergy.

CHILDREN’S AUTOIMMUNE BRAIN DISORDER ASSOCIATION (CABDA) Autoimmune brain disorders affect every part of the body. Complex illnesses often require specialized interdisciplinary care for effective solutions. We will bring professionals together from medical, psychological, behavioral, educational backgrounds to share knowledge and collaborate in order to effectively address the challenges of autoimmune brain disorders. We will also team up with business leaders, public health officials, mental health organizations, clinical research facilities and other non-profit organizations to provide solutions to the challenges of autoimmune brain disorders and better support children and families. We value unity and strive to foster coordinated, strategic initiatives that are collaborative, and help us to accomplish our shared goals more efficiently.

PANDAS NETWORK (est. 2009) is a parent advocacy nonprofit devoted to improving the diagnosis and treatment of children and young adults afflicted with the spectrum of acute onset psycho-neuro-immuno disorders of the brain which include PANDAS-PANS & AE. Armed with an impressive network of doctors, researchers and scientists we create public awareness and resources to inform the medical community and families about this evolving disease model. Since 2013 PANDAS Network has held an annual conference in both the U.S. and Europe. We offer micro-grants to initiate research of the brain and its link to autoimmunity. PANDAS Network - NIMH Outreach Partner, Affiliate of the IOCDF & Pandas Physicians Network.

PEPSICO We are so very grateful for Pepsico's generous donation for our luncheon of snacks and drinks!

Meet The Team

Susan Foley

Martha Myers

Maddy Boehme

Sally Carty

Lisa Foley

Kimberley deHaseth

Samime Baldini

Nicola Nelson

Scott Foley

Ilene Perlemutter

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PLEASE NOTE:

This website is not a substitute for professional advice, and the content here is not intended for use in diagnosing, curing, or preventing disease. The site does not employ and is not overseen by medical professionals. Articles and studies listed here are intended solely for personal use and reference.  Although you will find a great deal of information about HE/SREAT on this website, HESA cannot provide medical advice. If you have HE/SREAT, or think you may have it, consult a qualified neurologist,

preferably one with experience addressing immune-mediated illness. 

© 2019 Hashimoto's Encephalopathy SREAT Alliance,  an Illinois not-for-profit corporation