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THE HERD July 2020~ 3rd edition

theherd - THE HERD July 2020~ 3rd edition

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

Selected Highlighted News in the field of Autoimmune

Encephalitis July 2020 3rd edition

In this Issue~


    •  Announcements: AE Warrior Store, AE Trivia Playing Cards
    • Children’s Corner: The 100+ Best Virtual Tours & Field Trips for Kids and Students in 2020, A Special Message from the STEMettes
    • Most Popular Visual of the Month: Treatment for AE
    • COVID-19’s Impact on the AE Community: FDA Adds to Toxic Sanitizer Warning List, COVID-19 and the Brain
    • Most Popular Download: AE Infographic Fact Sheet
    • Clinician’s Corner: Update on the diagnosis and management of autoimmune encephalitis
    • COVID-19 Clinician’s Corner: Neurological associations of COVID-19
    • Open Access: Stop testing for autoantibodies to the VGKC-complex: only request LGI1 and CASPR2

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 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. 

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





The 100+ Best Virtual Tours and Field Trips for Kids and Students in 2020





With the world stopped and kids getting restless at home, parents are dreaming of the days where field trips were still something to look forward to.

Now that many attractions have implemented crowd limits for the near future, visiting museums, parks, aquariums, and our other favorite spots may need to wait until the Covid-19 is under control.

Fortunately, many of these incredible places offer virtual tours! We have compiled the ultimate list of everything from amusement parks to zoos so that you and your little ones can enjoy them from the comfort and safety of your own home!

A Special Message and Recommendation from the STEMettes

The Stemettes, a social enterprise which encourages young girls starting at age 5 to pursue careers in Science, Technology, Engineering, and Maths (abbreviated STEM), contacted IAES to praise the resources we provide on our #StrongerTogether page.

The group decided to have a math marathon as a fun educational activity from home (they meet on Zoom due to the pandemic). IAES’ list of math sites gave them many awesome references to include and they were kind enough to send IAES a  personal thanks!

Roger Jarvis, who leads the group, asked the girls if there were any other good references they could share with IAES to return the favor. They recommended a fun app game called Math vs Zombies that is very popular with the STEMettes. Another suggestion was sent into us by one of their superstars, Skylar. It is called Math and Money fun for Students. She says, “It’s got a bunch of math games and I really like the problem-solving section.”

The STEMettes thought both would be good contributions to out #StrongerTogether page and asked if we would consider adding them. Roger lamented in his letter, ” I’d love to show everyone at our Zoom meeting this week so they can see what a superstar Sky is! ” Roger and the STEMettes closed their letter by saying, ” Thanks again for entertaining us all during these tough times. Please stay safe out there, best wishes to the IAES Warriors!”

Well Skylar, we are very proud of you and thankful to all the STEMettes for such a generous spirit in ‘paying it forward’. Your suggestions are proudly recommended on our #StrongerTogether page under ‘Home Schooling/School Resources’. 

You have our appreciation for your returned kindness. 

Most Popular Visual

Autoimmune Encephalitis Infographic fact sheet

Due to the popularity of our Autoimmune Encephalitis Infographic meme, IAES is now providing this as a downloadable Fact Sheet. We encourage you to print it out and take it with you the next time you go to the hospital, infusion center, or have a physical appointment with your physician. It’s a wonderful way to raise awareness for autoimmune encephalitis. 

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

COVID-19’s impact on the AE Community

FDA Adds to Toxic Sanitizer Warning List

Easy Read Article ~

The FDA is warning people to avoid dozens of hand sanitizers because they may contain methanol, a substance that can be toxic when absorbed through the skin. Many were labeled as containing ethanol, which is safe, but tested positive instead for methanol, also known as wood alcohol.

This article contains a list of types of hand sanitizers to avoid.

Anyone who has been exposed to a hand sanitizer with methanol should seek medical treatment right away.

Methanol exposure can be deadly and lead to nausea, a headache, blurred vision, blindness, seizures, and permanent damage to the nervous system, according to the FDA.


COVID-19 and the Brain






Easy Read Article: 

Thanks to PennNeuroKnow for this helpful blog written by: Nitsan Goldstein 

The novel coronavirus has infected close to 8 million people worldwide, with infections in every US state and nearly every country on Earth. Most people develop fever, cough, and shortness of breath. However, as more people become infected, less common symptoms are being documented by doctors around the world. Among these are a set of neurological symptoms that suggest that SARS-CoV-2, the virus that causes COVID-19, may affect the brain. Here we will examine what these symptoms are, what is known about how SARS-CoV-2 and other coronaviruses can damage the brain, and how much work is still needed to understand the impact of this virus on the human body.

A virtual conference on the COVID-19 pandemic with World Health Organization Director-General Tedros and Dr. Anthony Fauci.

Most Popular Visual~

Treatment Algorithm






The above treatment algorithm is from the research paper,  Diagnostic and Therapeutic Approach to Autoimmune Neurologic Disorders by: A. Sebastian López-Chiriboga, MD and Eoin P. Flanagan, MD of the Mayo Clinic. It is located on the ‘Treatment’ page of our website.

Clinician’s Corner

Update on the diagnosis and management of autoimmune encephalitis

Autoimmune encephalitis should be a key part of the differential diagnosis in patients with alterations in cognition, consciousness, personality, or behavior.

Antibody testing should be guided by recognizable clinical syndromes, but also should account for the expanding numbers of recognized antibodies and overlapping phenotypes.

Autoimmune encephalitis may present sub-acutely with normal or subtly abnormal cerebrospinal fluid findings and neuroimaging.

Despite severe symptoms and long intensive treatment, unit stays, the outcome of autoimmune encephalitis is good in most cases if early immune therapy is given.

The optimum first- and second-line treatment strategy for autoimmune encephalitis is unclear and well-designed clinical trials are needed.


COVID-19 Clinician’s Corner

Neurological associations of COVID-19



17-page review which includes an encephalitis section. The COVID-19 pandemic, caused by severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2), is of a scale not seen since the 1918 influenza pandemic.  Encephalopathy has been reported for 93 patients in total, including 16 (7%) of 214 hospitalized patients with COVID-19 in Wuhan, China, and 40 (69%) of 58 patients in intensive care with COVID-19 in France. Encephalitis has been described in eight patients to date, and Guillain-Barré syndrome in 19 patients.

Overall, the proportion of patients with neurological manifestations are small compared with that with respiratory disease. However, the continuing pandemic, and the expectation that 50–80% of the world’s population might be infected before herd immunity develops, suggest that
the overall number of patients with neurological disease could become large. Neurological complications, particularly encephalitis and stroke, can cause lifelong disability, with associated long-term care needs and potentially large health, social, and economic costs. Health-care
planners and policymakers need to be aware of the growing.


Stop testing for autoantibodies to the VGKC-complex: only request LGI1 and CASPR2

Key points

  • Patients with pathogenic LGI1 or CASPR2 autoantibodies show distinct clinical syndromes and excellent responses to immunotherapy.
  • In contrast, those with non-pathogenic VGKC antibodies but with no LGI1 or CASPR2 reactivities have heterogeneous clinical syndromes and poor responses to therapy.
  • Testing for VGKC antibodies is deleterious for patient care and should cease.
  • By contrast, directly testing for LGI1 and CASPR2 antibodies can offer clear clinical benefit, with an accurate diagnosis and the chance of disease-modifying therapies.

  (VGKC) antibodies that lack LGI1 or CASPR2 reactivities (‘double-negative’) are common in healthy controls and have no consistent associations with distinct syndromes. These antibodies target intracellular epitopes and lack pathogenic potential. Moreover, the clinically important LGI1 and CASPR2 antibodies comprise only ~15% of VGKC-positive results, meaning that most VGKC-antibody-positive results mislead rather than help. Further, initial VGKC testing misses some cases that have LGI1 and CASPR2 antibodies. These collective observations confirm that laboratories should stop testing for VGKC antibodies and instead, test only for LGI1 and CASPR2 antibodies. This change in practice will lead to significant patient benefit.

Double-negative VGKC antibodies usually target intracellular epitopes and lack pathogenic potential. The VGKC antibody titer is not a clinically reliable measure. The concept of a ‘clinically relevant’ VGKC antibody titer has created many misdiagnoses, often where finding the antibody has overruled the clinical diagnosis. The evidence from multiple international groups suggests there are no longer clinical reasons to test for VGKC antibodies. Stopping this test will reduce clinically irrelevant results, improve diagnostic accuracy, and limit the use of unnecessary, potentially toxic, immunotherapies in patients.


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.

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.

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.

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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