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theherd - THE HERD March 2021~1st edition

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

Selected Highlighted News in the field of Autoimmune Encephalitis~ March 2021 1st Edition

In this Issue~

  • *Announcements: AE Speakers Series Webinar Recordings Now Available, AE Studies Seek Your Participation, 3rd Annual Virtual Art Show, This is Our Time Awareness Video
  • *AE Warrior Store: Puzzles featuring original art by AE patients
  • *Children’s Corner (for all ages): What are Child Life Specialists?, Association of Rituximab Use With Adverse Events in Children, Adolescents, and Young Adults  
  • ABI Rehabilitation: Mental Movement Cognitive Exercise Worksheets
  • Useful Tips for the AE Warrior: State Waiver Programs, Patient/Caregiver Resource Guide for AE
  • Most Popular Downloads: AE infographic now available in English, Spanish & German
  • *COVID-19’s Impact on the AE Community:  COVID-19 May Hide in Brains and Cause Relapses, Autoimmune limbic encephalitis related to SARS-CoV-2 infection: Case-report and review of the literature
  • *Featured AE Article: Clinical spectrum of high-titre GAD65 antibodies
  • *Clinician’s Corner: AQP4-IgG-seropositive neuromyelitis optica spectrum disorder (NMOSD) coexisting with anti-N-methyl-D-aspartate receptor (NMDAR) encephalitis: A case report and literature review
  • *COVID-19 Clinician’s Corner: Why is COVID-19 less severe in children? A review of the proposed mechanisms underlying the age-related difference in severity of SARS-CoV-2 infections
  • *Open Access: Autoimmune encephalitis with psychiatric features in adults: historical evolution and prospective challenge

Webinar Recordings From Speakers Series Now Available

view-recordings-Speakers Series-Feb-2021

All five webinars in our AE Awareness Month Speakers Series have been a rousing success.  IAES is so pleased to have gathered experts of such caliber to present on the key areas of Autoimmune Encephalitis. The five speakers each discuss a topic, that when combined, provides the audience with a completed education of autoimmune encephalitis.  Providers and patients alike have hailed this series as the best they have attended on autoimmune encephalitis.  Recordings are available on the AE Speakers page and within the IAES video library.

  Webinar #1 Eoin P. Flanagan, M.B, B.Ch., Mayo Clinic, Rochester Presented on Autoimmune Encephalitis   

Webinar #2 Justin R. Abbatemarco, MD, Presented on AE Treatments and long-term management 

Webinar #3 Belinda Lennox, DM FRCPsychPresenting Presented Autoimmune Psychosis and Psychosis in Autoimmune Encephalitis

Webinar #4 Stefanie Rodenbeck, MD, Presented on Autoimmune Epilepsy 

Webinar #5 Michael Sweeney, MD, Presented on Pediatric Autoimmune Encephalitis

Two AE Studies Seek Your Participation

Dr Mastura Monif-Victoria-Australia

AE Patients Residing in Australia ~Your Participation is Needed

Dr. Mastura Monif, a member of the IAES Medical Advisory board who is located in Australia, is conducting a study on autoimmune encephalitis and seeks patient participation. 

The Monif Group 

Leads The Australian Autoimmune Encephalitis Consortium Project that consists of up to 13 health and academic centers around the country bringing national experts together to tackle the issue of Autoimmune Encephalitis facing the Australian population.

The group has formed the Australian Autoimmune Encephalitis Consortium bringing together national experts from 4 states around the country to tackle the issue of AE facing the Australian Health sector. With this study, they hope to produce the largest cohort of retrospective and prospective cases of AE in Australia with the aim of gaining a better understanding of disease trajectory as well as identifying key clinical, electroencephalogram/seizure phenotype, cellular and biochemical, radiological & cognitive biomarkers of disease onset, progression & outcome. This study brings together a collaborative & multidisciplinary team of neurologists, neuroimmunologists, epilepsy experts, neuropsychologists, neuroradiologists, psychiatrists, and neuroscientists. The findings are hoped to generate extensive data regarding AE as well as the production of clinical guidelines for early identification, diagnosis & treatment of these devastating conditions.

E-mail Dr. Monif regarding Study Participation


I am an advocate

Caregivers/Family Members of AE Patients Residing in the United Kingdom ~Research Recruitment Underway

Ellie Johnson,  a student undertaking the BSc (Hons)Psychology program at the University of Salford is looking for your assistance.  As part of her course, she is undertaking a research study titled: Investigating how families cope with the social and emotional impacts of a diagnosis of encephalitis: An Interpretive Phenomenological Analysis

Ms. Johnson is looking to research the experiences and impacts of a diagnosis of encephalitis among the families and carers of patients. By using interpretive phenomenological analysis, she wishes to understand the families’ lived experience and how they coped with this diagnosis. She hopes that this will generate an understanding of the support needs of families and carers.
Any data collected will remain confidential. Ms. Johnson has gained ethical approval for the study from the University of Salford, School of Health and Society Taught Ethics Committee.
Her research is supervised by Dr. Lynne Marrow 
To participate in the study, contact Ellie Johnson via e-mail. Your participation will make a valuable contribution. 


3rd Annual Virtual Art Show Gains Global Attention


Always a favored event, the 2021 IAES Virtual Art Show gained global attention in February with visitors from every corner of the globe.

We asked for submissions in all forms of art and the AE community did not disappoint.  This year’s show included a wide variety of art expressed in literary, traditional, and graphic art which extended to video and tattoos from AE patients, caregivers, and family members of all ages.

Get an emotional look into living with AE by this stunning display of artistic talent. The experience is sure to move you and stay with you long after you finish viewing the show. Don’t worry if you missed it. All past art shows are available for viewing on the IAES website. 

This is Our Time AE Awareness Video 2021

The debut of IAES’s much anticipated 5th annual awareness video, This is Our Time, exceeded expectations reaching 1,000 views in three days!

The video features AE patients of all ages from around the world and takes the audience on an eye-opening journey of how suddenly AE strikes, how extreme the crisis can be, the wide range of ages impacted, and the courage and determination patients muster in fighting to regain their health.  Hope, faith, and inner-strength are on full display in this short film. 

By the film’s end, the viewer has an understanding of what AE is, how quickly it impacts people’s lives and the importance of raising awareness that will lead to saving lives and a cure.  

This is Our Time, is dedicated to increasing awareness of autoimmune encephalitis by creating a ripple effect of positivity and empowerment for patients and their loved ones.

AE Warrior Store

Puzzles Featuring Original Art by AE Warriors

New arrivals ~ The AE Warrior Store has 13 puzzles featuring original art by autoimmune encephalitis patients available.  Puzzles come in three sizes, all rated as ‘challenging’, 60-pieces, 110-pieces, and 252-pieces. A unique gift for any AE Warrior working on cognitive rehabilitation due to brain injury from AE & a wonderful collector’s item. Working on a puzzle designed by a fellow AE patient who has lent their talent to an effort to help other AE patients reach their rehabilitation goals will inspire any AE Warrior and reinforce the knowledge that no one walks this journey alone. We are family to each other and are always #StrongerTogether. 

Puzzles are a highly recommended cognitive exercise for anyone with a brain injury or in recovery from illness. Puzzles assist with comprehension, organization, memory, hand-eye coordination, fine motor skills and provide goal setting, patience, and a sense of achievement.

Children’s Corner

The Association of Child Life Professionals

Coping with illness, injury, and medical treatment is often challenging and stressful for children, adolescents, and their families. For pediatric patients of all ages, hospitalization and outpatient treatment can lead to feelings of fear, confusion, and vulnerability. In addition, the isolation associated with hospitalization and certain medical conditions and treatments can inhibit children’s natural development and negatively affect their physical and emotional health.

When children are hospitalized, parents struggle to explain the treatments they may receive but there is help. Child life specialists are in children’s hospitals. They use play to help children understand their disease, treatments and help them cope with hospitalization, and missing their friends and family. Especially now with COVID-19, Child life specialists can be an important support to both children and families.



Association of Rituximab Use With Adverse Events in Children, Adolescents, and Young Adults

Key Points

Question Is the use of rituximab for young people associated with short- or long-term adverse events?

Findings This cohort study identified 468 patients younger than 21 years receiving rituximab for more than 25 indications, among whom infectious and noninfectious adverse events were common. The majority of these events were mild, but a small population experienced prolonged immune suppression and severe infections following even single courses of rituximab.

Meaning Findings suggest that rituximab appears to be well tolerated among young people, but the observed frequent infections and prolonged recovery of B lymphocyte numbers highlight the need for better strategies to mitigate infection risk in this population.

ABI Rehabilitation From AE

Cognitive rehabilitation- FB-links to cognitive exercise worksheets on website

Cognitive Mental Movement Exercises

Here is a new set of cognitive rehabilitation worksheets, packet #30. They give AE patients the ability to practice and work on cognitive skills impacted by brain injury caused by autoimmune encephalitis. Courtesy of our friends at Happy Neuron.

Mental movement is a complex cognitive skill needed in order to plan things out. It not only helps with visual-spatial skills but with the ability to organize information, make mental-visual comparisons, and overall decisions based upon order or comparison. 

 In this worksheet, you receive 4 exercises to use to practice strategies related to mental movement. Whether it’s mentally moving a ball from one hoop to another, remembering where objects are placed, using language clues and space markers to complete a sentence, and/or mentally reflecting a pattern this packet has all of that and more. You will be exposed to different task requirements, all sharing the underlying component of mentally moving objects. This worksheet challenges: working memory, attention, visual-spatial skills, and language. 

Useful Tips for Patients & Families

State Waiver Program ~ USA

In the USA, state waiver programs can provide home care, case management, and needed equipment for individuals with disabilities. Some states offer the programs for both adults and children, the requirements for the programs vary from state to state, as does the process for application. If approved the individual becomes eligible for Medicaid. The program is called a waiver as it waives insurance and its goal is to ensure safe and efficient care at home. You can look up the waiver programs of your state at

The First Aid Tool Kit

A Patient/Caregiver Resource Guide for Autoimmune Encephalitis

Lost and Confused Signpost
The “First-Aid Tool Kit” is a key patient resource guide to managing your care written by IAES advocates for anyone touched by autoimmune encephalitis.
Navigating your medical care when you have been diagnosed with an under-recognized neuroimmunological disease that presents with psychiatric symptoms, has challenging pitfalls. This pro-active preparedness guide is designed to assist you through that unique journey.
This valuable guide is FREE and we believe it to be a MUST download to help you advocate for yourself and navigate the many challenges faced with a rare disease.
Please keep it with you. We hope it helps in times of crisis and in your daily life. The information contained within may save your life or prevent psychiatric misdiagnosis.

Most Popular Download

AE Infographic Poster Now Available in English, Spanish & German


COVID-19’s Impact on the AE Community

COVID-19 May Hide in Brains and Cause Relapses

Newly Published article. Easy Read.
The coronavirus may remain in people’s brains after infection and trigger relapses in patients who thought they had recovered, according to a new study published in the journal Viruses.
The research team found that the virus was located in the brains of mice at a level that was 1,000 times higher than in any other part of the body. Viral loads in the lungs began to drop after three days but remained high in the brain on the fifth and sixth days after infection, which is when the disease became more severe.
“Once it infects the brain, it can affect anything because the brain is controlling your lungs, the heart, everything,” he said. “The brain is a very sensitive organ. It’s the central processor for everything.”
COVID-19 survivors whose infections reached their brain could also become susceptible to other serious medical conditions in the future, such as Parkinson’s disease, multiple sclerosis, cognitive decline, and autoimmune diseases, he added.


Autoimmune limbic encephalitis related to SARS-CoV-2 infection: Case-report and review of the literature

Case report: Two weeks after the onset of COVID-19 infection, a 74-year-old woman presented with subacute confusion and focal motor seizures with impaired awareness, starting from the left temporal region. The cerebrospinal fluid analysis revealed hyperproteinorrachia. Brain MRI showed bilateral T2/FLAIR hyperintensities in both hippocampi and total-body PET/TC scan revealed hypermetabolism in basal ganglia bilaterally. A diagnosis of autoimmune LE was made. Thus, high-dose corticosteroids and antiseizure medications were started, with a marked improvement of neurological conditions.

Conclusion: A very limited number of autoimmune LE have been described until now. It is important to monitor neurological symptoms in COVID-19 patients and to consider the possibility of an autoimmune LE, in particular when altered mental status and seizures appear late in the disease course. This allows to promptly start the appropriate treatments and avoid unnecessary delays.

Featured AE Article~

Clinical spectrum of high-titre GAD65 antibodies

Objective To determine clinical manifestations, immunotherapy responsiveness, and outcomes of glutamic acid decarboxylase-65 (GAD65) neurological autoimmunity.

Methods We identified 323 Mayo Clinic, patients with high-titre (>20 nmol/L in serum) GAD65 antibodies out of 380 514 submitted anti-GAD65 samples (2003–2018). Patients classified as having GAD65 neurological autoimmunity after chart review were analyzed to determine disease manifestations, immunotherapy responsiveness, and predictors of poor outcome (modified Rankin score >2).

Interpretation High-titre GAD65 antibodies were suggestive of, but not pathognomonic for GAD65 neurological autoimmunity, which has a discrete core and secondary manifestations. SPSD was most likely to respond to immunotherapy, while epilepsy was the least immunotherapy responsive. Complete immunotherapy response was rare. Serum GAD65 antibody titre >500 nmol/L and cerebellar ataxia predicted poor outcome.


Clinician’s Corner

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AQP4-IgG-seropositive neuromyelitis optica spectrum disorder (NMOSD) coexisting with anti-N-methyl-D-aspartate receptor (NMDAR) encephalitis: A case report and literature review


•Patients with overlapping AQP4-IgG-seropositive NMOSD and anti-NMDAR encephalitis with positive NMDAR antibodies in the CSF are rare but should not be ignored.

•When NMOSD patients show unusual symptoms (abnormal behavior, prominent psychiatric manifestations, cognitive dysfunction, autonomic dysfunction), or atypical supratentorial lesions, the coexistence of anti-NMDAR encephalitis should be considered.

•Compared to simple anti-NMDA receptor encephalitis, patients with co-morbidities require stronger immunotherapy and second-line immunosuppressive therapy must be initiated as soon as possible.

woman in pain wearing mask covid

COVID-19 Clinician’s Corner


Why is COVID-19 less severe in children? A review of the proposed mechanisms underlying the age-related difference in severity of SARS-CoV-2 infections


In summary, the observation that, compared with other respiratory viruses, children have less severe symptoms when infected by SARS-CoV-2 is surprising and not yet understood. Furthermore, it is also uncertain why children with the usual risk factors for infections, such as immunosuppression, are not at high risk for severe COVID-19, while previously healthy children can on rare occasions become severely ill.  Although there are several hypotheses for why children are less affected by COVID-19, with the notable exception of age-related changes in immune and endothelial/clotting function, most do not explain the observed age-gradient in COVID-19 with severity and mortality rising steeply after the age of 60 to 70 years. Unraveling the mechanisms underlying the age-related differences in the severity of COVID-19 will provide important insights and opportunities for the prevention and treatment of this novel infection.

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Autoimmune encephalitis with psychiatric features in adults: historical evolution and prospective challenge

This review aims to delineate the psychiatric spectrum of autoantibody-associated autoimmune encephalitis over time through its discoveries of antibodies. Autoimmune encephalitis is a disorder that can dynamically alter its phenotypical appearance over time. It is often characterized by an initial psychiatric manifestation or reveals predominant or isolated psychiatric features. The aim of this review is to depict the historic evolution of the published psychiatric phenomenology of autoimmune encephalitis.

AE Trivia Playing Cards

The perfect companion for patients, Caregivers & Therapist

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. 

Ways to Shop & Support IAES

Have you wanted to support IAES, autoimmune encephalitis awareness, and the AE Warrior that you love?

Have you found our services helpful? Do you want to make sure patients are identified early and that they and their loved ones receive the best help possible during this difficult journey?

Here is an easy and affordable way to donate without feeling a thing when shopping with your Paypal account. Each time you check out you will be reminded that you can give $1 to IAES.

shop with Paypal-Facebook Post
Shop on line amazon Smiles FB - THE HERD March 2021~1st edition

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.

mission2 - THE HERD March 2021~1st edition

International Autoimmune Encephalitis Society is proud to be a platinum level participant on the Guide Star exchange, demonstrating or commitment to financial transparency.  IAES is a charitable non-profit 501 (c)(3) organization. Tax ID#81-3752344

Donations raised are greatly appreciated and directly support research, patients, caregivers, and families through their journey so the best outcomes can 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.

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.

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