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theherd - THE HERD May 2021 1st edition

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

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

In this Issue~

  • *Announcements: New program #AETuesdayTries, AE Study in Australia seeks your participation, #RAREis Scholarship Fund $5,000 Educational Grant
  • *Children’s Corner (for all ages): The challenge of diagnosing and successfully treating anti-NMDA receptor encephalitis in a toddler, Clinical Features and Outcomes of Anti-N-Methyl-d-Aspartate Receptor Encephalitis in Infants and Toddlers
  • ABI Rehabilitation: Visual Attention Worksheets, AE Warrior Word Search
  • Useful Tips for the AE Warrior:  31 Strategies for Living with Brain Injury, Wear a Medical Alert bracelet 
  • Most Popular Visual Downloads: Life with Autoimmune Encephalitis, Diagnostic Clues of anti-NMDAr encephalitis
  • *COVID-19’s Impact on the AE Community:  New guidelines for people who have been vaccinated vs unvaccinated individuals from COVID-19, Can Immunocompromised People Safely Receive the COVID-19 Vaccine?
  • *Featured AE Article: Epilepsy Study Shows Link Between Brain Activity and Memory, Neurobehavioral Initiation and Motivation Problems After Acquired Brain Injury
  • *Clinician’s Corner: Prospective Quantification of CSF Biomarkers in Antibody-Mediated Encephalitis
  • *COVID-19 Clinician’s Corner: Rare Thrombosis Linked to J&J Vaccine: What to Look For, How to Manage It
  • *Open Access: Neural Autoantibodies in Cerebrospinal Fluid and Serum in Clinical High Risk for Psychosis, First-Episode Psychosis, and Healthy Volunteers
  • *AE Trivia Cards: The single most important educational/rehabilitation tool for AE
  • *AE Warrior Store: See our new AE mug and hat collections

IAES is launching “Tuesday Tries” on March 25th. This monthly zoom meet-up will take place the last Tuesday of each month and will celebrate your critical milestones in recovery and care and help you to build a more resilient network!

Your host, Tessa McKenzie, IAES’ Chief Resilience Officer, is a life coach and studies “resilience” through her private practice, Envisage Vocation Creation and work with Johns Hopkins University’s Life Design Lab. 

Join Tessa and other AE patients and caregivers who are ready to “Share Your Try Tuesdays”. Tessa will provide prompts for the reframe of perceived failures as well as peer-to-peer validation of “wins’ and opportunities for relationship building.

AE Study 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


EveryLife Foundation for Rare Diseases #RAREis Scholarship Fund $5,000 Educational Grant


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Attention Rare Disease Community!

One-time awards of $5,000 each will be granted to up to 35 recipients for the Fall 2021 semester. Apply for this $5,000 Educational Grant today. Applications are open until May 7th.

Living with a rare disease means managing unique challenges, including frequent doctor visits, rigorous treatment regimens and hospitalizations, and exposure risks. While quality and duration of life continues to improve thanks to improved diagnosis and treatment approaches, individuals living with rare diseases still face disparities in achieving traditional life milestones.

That’s why the EveryLife Foundation for Rare Diseases established the #RAREis Scholarship Fund – to enrich the lives of adults living with rare diseases by providing support for their educational pursuits. Thanks to the support of Horizon Therapeutics plc, one-time awards of $5,000 each will be granted to up to 35 recipients for the Fall 2021 semester.

Children’s Corner

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The challenge of diagnosing and successfully treating anti-NMDA receptor encephalitis in a toddler

Anti-N-methyl-D-aspartate (anti-NMDA) receptor encephalitis is an immune-mediated syndrome that is still under-recognized, with grave consequences if not treated early. A multidisciplinary team approach is required in the process of diagnosis and management of this potentially treatable and reversible disorder.

This is a case study of a 26 month-old girl who was treated with intravenous (IV) corticosteroids, IV immune globulin, plasma exchange and rituximab. Her condition improved gradually, with full recovery when last seen 19 months after the onset of the disease.

Clinical Features and Outcomes of Anti-N-Methyl-d-Aspartate Receptor Encephalitis in Infants and Toddlers

Results: A total of 41 patients (age range: six to 34 months; median age: 23 months; female: 19) were enrolled in this study. Nineteen (46%) patients exhibited classical anti-NMDAR encephalitis, whereas 22 (54%) patients exhibited anti-NMDAR encephalitis after viral encephalitis. There was a high presentation of movement disorders (100%), developmental regression (90%), abnormal behaviors (90%). All patients were administered first-line therapy, with only 17% of them being administered second-line immunotherapy. Two patients succumbed to the disease, whereas none of them relapsed. At the long-term follow-up (more than one year), 20 of 35 (57%) exhibited satisfactory outcomes (modified Rankin Scale ≤2). Compared with patients with classical anti-NMDAR encephalitis (n = 18), patients after viral encephalitis (n = 17) were more likely to have worse clinical outcomes. They exhibited a higher modified Rankin Scale/Pediatric Cerebral Performance Category score and more frequent seizures. A predictor of poor outcome was presentation after viral encephalitis (odds ratio 35.7, 95% confidence interval 4.64 to 275.03, P = 0.001).

Conclusion: Anti-NMDAR encephalitis in infants and toddlers clinically presents with movement disorders, developmental regression, and abnormal behaviors. Interestingly, this group had a higher proportion of patients after viral encephalitis, which is regarded as the only risk factor for poor outcomes.

ABI Rehabilitation From AE

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Visual Attention Worksheets

Are you working on your cognitive rehabilitation from AE?

Our friends at HappyNeuron Pro have released its 34th worksheet packet!

This worksheet includes 4 exercises that focuses on visual attention.

These worksheets assist with memory, visual, and spatial relations.  They are ideal for re-learning and re-training the brain after brain injury received by autoimmune encephalitis.

Visit the IAES website to find other exercises that will assist with your cognitive rehabilitation.

AE Warrior Word Search Puzzle

AE Warrior_word search

Word Search puzzles and puzzles of all types are a wonderful exercise to do for brain injury rehabilitation from AE.  They are a great activity to help your AE warrior develop their problem-solving and analytical skills.

IAES has created several word search puzzles that feature hidden keywords that will encourage and aid in your learning and understanding of autoimmune encephalitis.

Challenge yourself with this puzzle and others that you will find as free downloads on our website. Then look through the puzzles in the AE Warrior Store that have been created with art by fellow AE patients. You are sure to become inspired and challenged in your recovery efforts.

Useful Tips for Patients & Families

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31 Strategies for Living with Brain Injury

Learning to live with a brain injury and life after autoimmune encephalitis can sometimes be trial and error to find strategies that work well for you. This article has suggestions that may make life easier to manage.

Then please visit our website to see a wide variety of Apps and tools that can assist you in your daily life.

medical id

Reminder to all members~ we all need to wear a medical I.D. Bracelet.

This will prevent anyone from misunderstanding symptoms as psychiatric or behavioral problems.

There are a variety of Medical alert bands you can order, several inexpensive ones are found on the Apps & Tools website page.

Most Popular Download

Life with Autoimmune Encephalitis


Diagnostic Clues of anti-NMDAr AE

diagnostic clues of anti-NMDAR encephalitis

Have you been diagnosed with anti-NMDAr autoimmune encephalitis?

If so, visit our anti-NMDAr encephalitis website page for an easy to read overview and helpful images and charts that will assist you in understand this type of AE.


COVID-19’s Impact on the AE Community

New guidelines for people who have been vaccinated vs unvaccinated individuals from COVID-19



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IAES encourages you to get vaccinated. Please discuss this with your doctor. It is also important to underscore that immunocompromised people, need to consult their healthcare provider about these recommendations, even if fully vaccinated as we have to continue following precautionary measures since the vaccination does not give the same level of protection to us as it does those without a compromised immune system.


Don't wait-vaccinate-FB post

As more people get vaccinated, what will getting vaccinated mean for immunocompromised people, and how does immunocompromised status potentially impact COVID-19 vaccine immunity?

People who are immunocompromised have weakened immune systems. According to the Centers for Disease Control and Prevention (CDC), this includes people who have diseases that affect their immune system.

“These COVID vaccines are not live vaccines,” Gulik says. “And so, a patient that is immunocompromised—no matter what degree of compromise—could take the vaccine.”

 Key Takeaways

  • Doctors recommend immunocompromised people receive the COVID-19 vaccine.
  • The Pfizer and Moderna COVID-19 vaccines do not contain live traces of COVID-19.
  • Depending on the person’s immunocompromised level, some may receive lower levels of immunity from the vaccine.

Featured AE Article~

Epilepsy Study Shows Link Between Brain Activity and Memory

Many of us with autoimmune encephalitis have a seizure disorder. Seizures can have an impact on memory. We may not always realize that we are having a seizure, often subclinical seizures can be just a feeling of nausea or Deja vu. However, these seizures can impact our memory. It can be helpful to take note of these feelings, particularly start to have these feelings after treatment , and to report them to your doctor.


Neurobehavioral Initiation and Motivation Problems After Acquired Brain Injury

If you have autoimmune encephalitis or are here in support of someone who does, you may have noticed that AE patients will talk about plans to do a project, but often have difficulty getting started on it. Or, once the project is underway, they struggle with seeing it to completion.

Apathy or a lack of motivation can be an issue that many people who have had autoimmune encephalitis struggle with.


Clinician’s Corner

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Prospective Quantification of CSF Biomarkers in Antibody-Mediated Encephalitis

Objectives: To determine whether neuronal and neuroaxonal injury, neuroinflammation and synaptic dysfunction associate with clinical course and outcomes in antibody-mediated encephalitis (AME), we measured biomarkers of these processes in CSF from patients presenting with AME and cognitively normal individuals.

Conclusions: CSF biomarkers suggest that neuronal integrity is acutely maintained in AME patients, despite neuroaxonal compromise. Low-levels of biomarkers of synaptic function may reflect antibody-mediated internalization of cell-surface receptors and may represent an acute correlate of antibody-mediated synaptic dysfunction, with the potential to inform disease severity and outcomes.

woman in pain wearing mask covid

COVID-19 Clinician’s Corner


Rare Thrombosis Linked to J&J Vaccine: What to Look For, How to Manage It

Despite concerns about the safety of the J&J vaccine, Praven George, DO, a neurointensive care and stroke specialist with Cleveland Clinic’s Neurological Institute. stresses the importance of getting vaccinated against COVID-19.  

“Widespread vaccination of all eligible individuals will move us toward herd immunity,” he says. “The CDC’s Advisory Committee on Immunization Practices has determined that the J&J vaccine’s benefits outweigh its risks, and no safety concerns have arisen with either the Pfizer-BioNTech or the Moderna vaccines across tens of millions of doses administered.” 

With the federal pause lifted on U.S. administration of the Johnson & Johnson (J&J) COVID-19 vaccine, new vigilance is in order for symptoms of the rare condition that led the Centers for Disease Control and Prevention (CDC) to temporarily halt use of the vaccine.

The pause was prompted by six known cases of cerebral venous sinus thrombosis (CVST) with thrombocytopenia that occurred two to three weeks following receipt of the J&J vaccine.

What CVST looks like

The most common symptom is a dull, pounding headache that becomes severe enough to prompt the individual to seek emergency care. While headache is very common in the general public, this type of headache stands out. “It alarms people who may not normally have headaches as well as those who suffer from migraines, because it may cause a headache different than a normal migraine.

Additionally, all experienced symptoms consistent with stroke or deep vein thrombosis. Some also reported bruising, vomiting or loss of consciousness — symptoms of increased pressure in the brain.

“Widespread vaccination of all eligible individuals will move us toward herd immunity,” he says. “The CDC’s Advisory Committee on Immunization Practices has determined that the J&J vaccine’s benefits outweigh its risks, and no safety concerns have arisen with either the Pfizer-BioNTech or the Moderna vaccines across tens of millions of doses administered.”

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Neural Autoantibodies in Cerebrospinal Fluid and Serum in Clinical High Risk for Psychosis, First-Episode Psychosis, and Healthy Volunteers

There is emerging evidence of the involvement of various neural autoantibodies and systemic non-CNS autoantibodies in atypical psychotic and mood syndromes. Therefore, it is essential to pay attention to those who present with polymorphic psychiatric symptoms, significant cognitive involvement, and neurological phenomena in daily clinical practice. Further, performing a careful neurological examination as well as a brain MRI scan and an EEG is essential to not miss neural antibody-associated autoimmune conditions. Consequently, in line with the majority of international guidelines, a comprehensive assessment is needed to detect autoimmune encephalitides. Our study highlights the importance of CSF analysis to reliably detect the involvement of immune processes and demonstrates the high specificity of positive CSF test results by the absence of detectable antibodies from our healthy controls.

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. 

AE Warrior Store

New Arrivals~Mugs and Hats

New arrivals ~ The AE Warrior Store has two new collections you will not want to miss. Caregivers, Advocates and AE warriors will appreciate receiving a mug or hat that raises awareness for autoimmune encephalitis. 

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 that may one day lead to a cure.

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
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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.

baC - THE HERD May 2021 1st edition

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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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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