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theherd - THE HERD August 2020~ 2nd edition

Don’t Be Left Behind. Keep Up With THE HERD!

Selected Highlighted News in the field of Autoimmune

Encephalitis August 2020 2nd edition

In this Issue~


    •  Announcements: Free subscription to Brain & Life Magazine (formerly Neurology Now), Nevertheless, she persisted t-shirt & face mask, AE Trivia Playing Cards
    • Children’s Corner (Students & Parents): Eliminate student loan debt, Scholarships for Students with Disabilities
    • Most Popular Visual of the Month: 5 Types of AE and how they are treated in the ICU
    • COVID-19’s Impact on the AE Community: Department of Education Q & A on Providing Services to Children with Disabilities During COVID-19,  Video: COVID-19 is affecting Kid’s brains leaving troubling side effects
    • Most Popular Download: The “Immune” in Autoimmune Encephalitis: The role of T and B Cells
    • Clinician’s Corner: Patients with anti-NMDAR encephalitis discloses two distinct types of immunostaining patterns
    • COVID-19 Clinician’s Corner: Immunology of COVID-19: Current State of the Science
    • Open Access: Open issues in antibody-mediated autoimmune encephalitis


Free subscription to Brain & Life Magazine (formerly Neurology Now) The current issue contains Mental Health: Managing Pandemic related PTSD, Safe Ways to Hug During COVID-19, Wellness: Your Self-Care Checklist and actor Emilia Clarke shares a message of hope with brain injury survivors during COVID-19.


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nevertheless, she persisted facemask
nevertheless, she persisted t-shirt

The AE Warrior Store launched Nevertheless, she persisted in T-shirt and 3-ply face mask last week and both have been a runaway success.

Wear this battle cry accompanied by the AE awareness ribbon with pride. Whether you are an autoimmune encephalitis warrior fighting to regain your health or raising awareness for AE for someone you love, products declare your victorious intent. 

The International Autoimmune Encephalitis Society designed and registered the AE awareness ribbon in 2015 to create public awareness for this group of brain diseases. The meaning of the color silver, which outlines the red, is for brain disease. The significance of the silver lining around the red represents hope. The meaning of red is inflammation (of the brain) and courage. It takes enormous courage to fight the disease. The zebra pattern represents rare diseases. Together the combination of color and pattern describes AE and what is required to reach restored health and recovery. The proceeds of your purchase will immediately support autoimmune encephalitis patients, caregivers, and families who are walking this difficult journey. Proceeds also go to support research

Visit our AE Warrior store to see a variety of products and t-shirts designed to raise AE awareness and support research. 



Created by IAES and in collaboration with Josep Dalmau, M.D., Ph.D. (The World’s leading expert on AE).  This deck answers 52 of the most commonly asked questions about AE and doubles as a rehabilitation tool.  Increase your knowledge and become a strong advocate quickly and easily with AE trivia cards. 

We appreciate the National Organization of Rare Diseases’ (NORD) enthusiastic support in recommending this groundbreaking product. 

You can now follow us on Instagram at intl_ae_society for educational and entertaining  visual information.

Children’s Corner (Student & Parents)





If You are disabled due to AE, Here’s how you can discharge your Student Loan Debt





Have you been deemed permanently disabled due to autoimmune encephalitis?

Do you have student loan debt but will be unable to work because of your disability? There is a program to discharge your student loans. This applies both to the student or for a parent who may have taken out a parent plus loan.

This article explains the documentation needed for the program.


Scholarships for Students with Disabilities

Are you a student looking for Scholarships that take your disability from autoimmune encephalitis into consideration?

As a student with a disability, you face many challenges in achieving academic success, especially in higher education. Pursuing post-secondary education can be fraught with adversity—but the financial burden doesn’t have to be part of it. This article compiles an extensive list of scholarships that provide funding relief for students with all types of disabilities.

Visit our Patient and Caregiver support page for student resources to find a scholarship that will assist you in reaching your educational goals. 

Most Popular Download

The “Immune” in Autoimmune Encephalitis: The role of T and B Cells

types of T and B cells_PNK

When we catch a cold, get an infection, or otherwise become sick, our bodies use a natural defense mechanism called the immune system to fight off what’s attacking us. The immune system has two ways of responding. The first, called innate immunity, involves physical and chemical barriers like the skin and saliva, as well as many different types of cells that “eat” and destroy whatever is causing the trouble. While this innate response happens very quickly, then downside is that it’s not very specific, and the immune cells can damage healthy parts of the body while trying to gobble up the foreign invaders. In order to specifically target particular offenders, the body uses its second way of responding: the adaptive immune system. This response can take days or weeks to develop, but is also able to remember what the foreign invader looked like, so if it attacks again a targeted reaction can occur faster than the first time. To acquire this immunity against a particular foreign substance, the body uses two types of cells that act in different ways: T cells (which develop in an organ called the thymus, that’s where the “T” comes from) and B cells (which mature in the bone marrow, hence the “B”). 

We encourage you to visit our AE Handouts and Fact Sheets page for other helpful downloads. 


COVID-19’s impact on the AE Community

Department of Education Q & A on Providing services to Children with Disabilities During COVID-19


back to school covid-19


The CDC has issued interim guidance to help administrators of public and private childcare programs and K–12 schools plan for and prevent the spread of COVID-19 among students and staff.

This Questions and Answers document outlines states’ responsibilities to infants, toddlers, and children with disabilities and their families, and to the staff serving these children.

The responses presented in this document generally constitute informal guidance representing the interpretation of the Department of the applicable statutory or regulatory requirements in the context of the specific facts presented here and are not legally binding.


COVID-19 is affecting Kid’s brains leaving troubling side effects



This is a must-watch NBC news story that features interviews with three doctors on our Doctor’s List – Dr. Ming Lim, Dr. Michael Zandi, and Assoc Prof Arun Venkatesan discuss the dangerous neurological effects, of encephalitis caused by COVID-19 in some of their pediatric patients.

Most Popular Visual~






5 types of AE_Tx_ICU_instagram
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Clinician’s Corner

Detailed morphological analysis of rat hippocampi treated with CSF autoantibodies from patients with anti-NMDAR encephalitis discloses two distinct types of immunostaining patterns

Anti-NMDA receptor encephalitis was first described thirteen years ago and has become one of the most important differential diagnoses for new-onset psychosis.

 In this piece of research just out on anti-NMDAr autoimmune encephalitis, the research identified at least two distinct patterns of immunoreactivity (A measure of the immune reaction caused by an antigen).

Data indicate that autoantibodies of pattern group 1 patients interact with postsynaptical NMDA receptors, while those of pattern group 2 patients preferentially target presynaptic NMDA receptors. Consequently, it will be very interesting to determine, whether pattern group 1 and 2 patients display distinct clinical phenotypes (forms- the observable physical or biochemical characteristics of an organism.) Ongoing studies will answer this question.


woman in pain wearing mask covid

COVID-19 Clinician’s Corner

Immunology of COVID-19: Current State of the Science



Here, we reviewed the recent literature and highlighted hypotheses that interrogate mechanisms for viral escape from innate sensing, for hyper inflammation associated with CRS and inflammatory myeloid subpopulations, for lymphopenia marked by T cell and NK cell dysfunction, and for correlates of protection and their duration, among others. Still, additional studies are needed to address how these immune differences across patients or between different types of coronavirus infections dictate who succumbs to disease and who remains asymptomatic. Existing studies of SARS-CoV-1 and MERS-CoV and ongoing studies of SARS-CoV-2 will likely provide a robust framework to fulfill that unmet need.

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Open Issues in antibody-mediated autoimmune encephalitis


The field of autoimmune encephalitis (AE) associated with antibodies against targets located on the surface of neurons has grown immensely in the last 10 years. This growth has been in terms of both published research of novel antibodies and pathogenic mechanisms, and the awareness and knowledge among neurologists and clinicians, although much remains to be done for those who are not neurologists.

To address the challenges of diagnosis and treatment, the Italian Working Group on Autoimmune Encephalitis has developed a consensus document. The advice provided is addressed to the clinician faced with a patient with AE, who must manage different issues in different phases of the disease.

Another major issue is represented by antibody-negative cases, considering that in world reference laboratories at least 7% of clinically definite LE are antibody negative. Although recently published guidelines by Graus et al., addressed the problem of providing criteria to diagnose possible and probable AE, independently of antibody results, it is not surprising that antibody-negative AE, which are mainly diagnosed after exclusion of other disorders, tend to have a poorer prognosis because of delayed treatments, as demonstrated in a recent Italian multicenter retrospective study.

AE are rare and still difficult to diagnose disorders. The diversity of neurologic presentations and the peculiar immunopathogenic mechanism imply knowledge of laboratory diagnostics and of different neurological disciplines.


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During the COVID-19 pandemic, it is vitally important that you #StayHome and practice #SocialDistancing. Grocery shopping, as well as all shopping, should be done online.

When you shop Amazon Smiles and select IAES as the non-profit you want to support, Amazon will donate 5% of our purchases to the International Autoimmune Encephalitis Society.

The need for our services has increased exponentially. This simple act of kindness, will support the work we do and advance our ability to service the community.

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Are YOU an IAES angel? Do you love someone with AE? Do you want to raise AE awareness to not just support AE Warriors but lead researchers to finding a cure?  The IAES Angel is someone who lifted IAES upward by ensuring that comfort, guidance and improved health is brought into an AE patient’s life.

IAES Angels are motivated by their Spirit of giving.  They are Champions in raising AE awareness. Your devotion to supporting our mission and improving the lives of those who suffer from AE is felt mightily and immediately put to use. 

When you become an #IAESANGEL, International Autoimmune Encephalitis Society will send you this badge and profile frame to place on your Facebook page or Website.  As badges ‘take flight’ heralding IAES has been ‘touched by an angel’, others will take notice and they too may find their wings. Together, we will create a future where AE is eradicated from this world and only referenced in medical history books.

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Your donations are greatly appreciated. Every dollar raised allows us to raise awareness and personally help Patients, Families and Caregivers through their Journey with AE so that best outcomes may be reached. Your contribution to our mission will help save a life and improve the quality of lives for others.  Be a part of the solution by supporting IAES.

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International Autoimmune Encephalitis Society (IAES) is a Family/Patient centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. 


Driven by the knowledge that “Education is Power”, Int’l AE Society manages an educational support group for patients diagnosed with Autoimmune Encephalitis and their loved ones on Face Book, empowering them to be strong self-advocates and advocates that will lead them to best outcomes and recovery. We are the premiere organization leading in these vital roles.

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Our website is not a substitute for independent professional medical advice. Nothing contained on our website is intended to be used as medical advice. No content is intended to be used to diagnose, treat, cure or prevent any disease, nor should it be used for therapeutic purposes or as a substitute for your own health professional's advice. Although THE INTERNATIONAL AUTOIMMUNE ENCEPHALITIS SOCIETY  provides a great deal of information about AUTOIMMUNE ENCEPHALITIS, all content is provided for informational purposes only. The International Autoimmune Encephalitis Society  cannot provide medical advice.

International Autoimmune Encephalitis Society is a charitable non-profit 501(c)(3) organization founded in 2016 by Tabitha Andrews Orth, Gene Desotell and Anji Hogan-Fesler. Tax ID# 81-3752344. Donations raised directly supports research, patients, families and caregivers impacted by autoimmune encephalitis and to educating healthcare communities around the world. Financial statement will be made available upon request.




Autoimmune Encephalitis Trivia Playing Cards

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