Select Page
theherd - THE HERD September 2020~ 2nd edition

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

Selected Highlighted News in the field of Autoimmune

Encephalitis September 2020 2nd edition

In this Issue~

* Announcements: IAES to be recognized at The George H.W. Bush Points of Lights Awards Celebrations, Survey on the impact of COVID-19 & autoimmune diseases, AE Warrior Store, AE Trivia Playing Cards
*Children’s Corner: Top Tips for Communicating Well with Children, Mysterious Post-COVID Syndrome Affecting Kids Appears to Be Even Worse Than We Thought
*Most Popular Visual of the Month: How the Brain Functions when Health vs Brain Injured
*COVID-19’s Impact on the AE Community: How the Corona virus Attacks the Brain, Vitamin D can help reduce coronavirus risk by 54%: Boston University doctor
*Most Popular Download: Aphasia as a Symptom in Autoimmune Encephalitis
*Clinician’s Corner: Allosteric modulation of NMDA receptors prevents the antibody effects of patients with anti-NMDAR encephalitis
*COVID-19 Clinician’s Corner: The first case of meningitis/encephalitis associated with SARS-Coronavirus-2, Identifying Airborne Transmission as the Dominant Route for the Spread of COVID-19 
*Open Access: Psychiatric Manifestation of Anti-LGI1 Encephalitis


Children’s Corner (Students & Parents)






IAES will be recognized in the Inspirational Honor Roll’ as part of The George H.W. Bush Points of Light Awards Celebration September 26-2020 for our development of Autoimmune Encephalitis Trivia Cards and COVID-19 response supporting the community.

The Inspiration Honor Roll celebrates both acts of kindness and service that demonstrates the light that indivduals bring to their communities around the world.


The George H.W. Bush Points of Light Awards Celebration will honor extraordinary individuals who demonstrate the traits of our 41st president – integrity, empathy, respect, optimism, a conviction in the face of opposition, and belief in the power of the human spirit. We will also celebrate and recognize people who are leading during these unprecedented times.


The George H.W. Bush Points of Light Awards Celebration will honor extraordinary individuals who demonstrate the traits of our 41st president – integrity, empathy, respect, optimism, a conviction in the face of opposition, and belief in the power of the human spirit. We will also celebrate and recognize people who are leading during these unprecedented times.

GHWB - Social Branding - Logo Only SQ-George HW Bush points of light honor roll-IAES

Survey: Emotional, Social, and Physical Impact of COVID-19 on the Autoimmune Disease Community

Thank you for participating in my study about the emotional, social, and physical impact of COVID-19 on the Autoimmune Disease community and how patients attempt to cope with their disease. My name is Scott Weitman and I am a 17-year-old high school student living with an autoimmune disease called alopecia areata. Alopecia areata causes me to lose my hair and I was devastated by being a student with no hair.

The goal of my survey-based project is to analyze the emotional, social, and physical impact of COVID-19 on autoimmune disease patients as well as identifying effective coping strategies for people living with an autoimmune disease.

Important information to know before beginning the survey:
-The purpose of this study is to:
-gain insight into the emotional, social, and the physical impact of COVID-19 on autoimmune diseases.
-gain insight into how people attempt to cope with their autoimmune disease.
-share effective coping strategies with people struggling with an autoimmune disease.
-The survey will take approximately 10 minutes to complete.
-The survey is for anyone above the age of 7 years old.
-If the participant is younger than 18 years old they have to have parental consent.
-An asterisk* means that the question is required.


IAES has designed several 3-ply masks that alert the public to the fact that you have AE and are at high risk of COVID-19 infection. In order to add a level of additional protection, we have designed a hat and 2 sided t-shirts with the ‘high risk’ graphic on the front and the message ‘If you can read this, you are too close”.  Any family member or loved one can wear these to signal ‘high risk’ to COVID-19 infection. The goal is that we assist in keeping you and your family safe.

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

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.


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. 

Children’s Corner (Students & Parents)





Top Tips For Communicating Well With Children





The channel of communication between a child and parent forms a benchmark for all future communications in a kid’s life. This is why it’s crucial to develop a healthy communication channel with your child at an early age.

A great back and forth with your child plays a major role in deepening and strengthening the bond with your little one. IAES is grateful to Ryan Howard of Smart Patient Advice for sending in this collection of great tips to help you communicate well with children.

Mysterious Post-COVID Syndrome Affecting Kids Appears to Be Even Worse Than We Thought

Easy Read –

After contracting and beating a coronavirus infection, a body needs time to rest, to recover its health and strength. Sadly, for some children, that isn’t what happens next.

A mysterious, new disease called multisystem inflammatory syndrome in children (MIS-C, and also known as a pediatric multisystem inflammatory syndrome or PIMS) has affected hundreds of children around the world since it was first discovered earlier this year.

The condition, thought to be somehow linked to COVID-19, can emerge in kids even after very mild coronavirus infections. But a light case of coronavirus is no guarantee that a subsequent case of MIS-C won’t be very serious, and sometimes even fatal.

“Children did not need to exhibit the classic upper respiratory symptoms of COVID-19 to develop MIS-C, which is frightening,” says neonatologist Alvaro Moreira from the University of Texas Health Science Centre at San Antonio.

“Children might have no symptoms, no one knew they had the disease, and a few weeks later, they may develop this exaggerated inflammation in the body.”

Most Popular Download

Aphasia as a Symptom of Autoimmune Encephalitis

Aphasia is a language disorder affecting at least 2 million Americans that impairs the ability to produce or comprehend speech, along with the ability to read or write. It can result from any injury or disease that damages the language centers of the brain, including autoimmune encephalitis (AE). To better understand aphasia in the context of AE, it is important to first know how the brain processes language as well as the different types of aphasia that can occur as a result of damage to any of these language centers. 



COVID-19’s impact on the AE Community

How the Coronavirus Attacks the Brain


The coronavirus targets the lungs foremost, but also the kidneys, liver, and blood vessels. Still, about half of patients report neurological symptoms, including headaches, confusion, and delirium, suggesting the virus may also attack the brain.

A new study offers the first clear evidence that, in some people, the coronavirus invades brain cells, hijacking them to make copies of itself. The virus also seems to suck up all of the oxygen nearby, starving neighboring cells to death.

It’s unclear how the virus gets to the brain or how often it sets off this trail of destruction. Infection of the brain is likely to be rare, but some people may be susceptible because of their genetic backgrounds, a high viral load, or other reasons.

“If the brain does become infected, it could have a lethal consequence,” said Akiko Iwasaki, an immunologist at Yale University who led the work.

The coronavirus seems to rapidly decrease the number of synapses, the connections between neurons. “Days after infection, and we already see a dramatic reduction in the amount of synapses,” Dr. Muotri said. “We don’t know yet if that is reversible or not.”


Vitamin D can help reduce coronavirus risk by 54%: Boston University doctor



A Boston University doctor says a sufficient amount of vitamin D can cut the risk of catching coronavirus by 54%.

Holick and his colleagues studied blood samples from Quest Diagnostics of more than 190,000 Americans from all 50 states and found that those who had deficient levels of vitamin D had 54% higher COVID positivity compared to those with adequate levels of vitamin D in the blood.

The risk of getting coronavirus continued to decline as vitamin D levels increased, the study, published in the Public Library of Science One peer-reviewed journal shows.


Most Popular Visual~






How the Brain Functions when Healthy vs when Injured



Brain functions healthy brain-injured brain-FB
image 20 - THE HERD September 2020~ 2nd edition

Clinician’s Corner

Allosteric modulation of NMDA receptors prevents the antibody effects of patients with anti-NMDAR encephalitis

About 85% of patients respond to immunotherapy (and removal of an associated tumor if it applies), but it often takes several months or more than 1 year for patients to recover.

There are no complementary treatments, beyond immunotherapy, to accelerate this recovery. Previous studies showed that SGE-301, a synthetic analog of 24(S)-hydroxycholesterol, which is a potent and selective positive allosteric modulator of NMDAR reverted the memory deficit caused by phencyclidine (a non-competitive antagonist of NMDAR), and prevented the NMDAR dysfunction caused by patients’ NMDAR antibodies in cultured neurons. An advantage of SGE-301 is that it is optimized for systemic delivery such that plasma and brain exposures are sufficient to modulate NMDAR activity.

All antibody-mediated pathogenic effects (memory, synaptic NMDAR, long-term potentiation) were prevented in the animals treated with SGE-301. Additional investigations showed  SGE-301 prolonged the decay time of NMDAR-dependent spontaneous excitatory postsynaptic currents suggesting a prolonged open time of the channel; and (ii) it significantly decreased, without fully preventing, the internalization of antibody-bound receptors suggesting that additional, yet unclear mechanisms, contribute in keeping unchanged the surface NMDAR density. Overall, these findings suggest that SGE-301, or similar NMDAR modulators, could potentially serve as a complementary treatment for anti-NMDAR encephalitis and deserve future investigations.


woman in pain wearing mask covid

COVID-19 Clinician’s Corner

The first case of meningitis/encephalitis associated with SARS-Coronavirus-2



The first Case of Meningitis/Encephalitis associated with SARS-Coronavirus-2


Novel coronavirus (SARS-Coronavirus-2:SARS-CoV-2) which emerged in Wuhan, China, has spread to multiple countries rapidly. This is the first case of meningitis associated with SARS-CoV-2 who was brought in by ambulance. The specific SARS-CoV-2 RNA was not detected in the nasopharyngeal swab but was detected in a CSF.

This case warns the physicians of patients who have CNS symptoms.

Identifying Airborne Transmission as the Dominant Route for the Spread of COVID-19th



Our analysis reveals that the difference with and without mandated face-covering represents the determinant in shaping the pandemic trends in the three epicenters. This protective measure alone significantly reduced the number of infections, that is, by over 78,000 in Italy from April 6 to May 9 and over 66,000 in New York City from April 17 to May 9. Other mitigation measures, such as social distancing implemented in the United States, are insufficient by themselves in protecting the public. We conclude that wearing of face masks in public corresponds to the most effective means to prevent interhuman transmission, and this inexpensive practice, in conjunction with simultaneous social distancing, quarantine, and contact tracing represents the most likely fighting opportunity to stop the COVID-19 pandemic. Our work also highlights the fact that sound science is essential in decision-making for the current and future public health pandemics.

To keep up-to-date with articles on COVID-19 and how it relates to our AE community by visiting the IAES COVID-19 articles page.


image 15 - THE HERD September 2020~ 2nd edition

Psychiatric Manifestation of Anti-LGI1 Encephalitis


If you have LGI1 AE, this is an interesting case study. It stresses the importance of early diagnosis. To watch for specific Red Flags that alert the Doctor to an organic cause and warns that delay may cause permanent damage compatible with frontotemporal dementia (“state of damage”).

Case Report- Conclusion: This case study describes a patient with anti-LGI1 encephalitis in the chronic stage and a predominant long-lasting psychiatric course with atypical symptoms of psychosis and typical neurocognitive deficits. The patient’s poor response to anti-inflammatory drugs were probably due to the delayed start of treatment. This delay in diagnosis and treatment may also have led to the FDG-PET findings, which were compatible with frontotemporal dementia (“state of damage”). In similar future cases, newly occurring epileptic seizures associated with psychiatric symptoms should trigger investigations for possible autoimmune encephalitis, even in patients with addiction or other pre-existing psychiatric conditions. This should in turn result in rapid organic clarification and-in positive cases-to anti-inflammatory treatment. Early treatment of anti-LGI1 encephalitis during the “inflammatory activity state” is crucial for overall prognosis and may avoid the development of dementia in some cases


Shop on line amazon Smiles FB - THE HERD September 2020~ 2nd 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.

baC - THE HERD September 2020~ 2nd 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.

mission2 - THE HERD September 2020~ 2nd edition

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.

seal2 - THE HERD September 2020~ 2nd edition
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.

image 23 - THE HERD September 2020~ 2nd edition

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.

Translate »