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THE HERD January 2021~ 2nd edition

theherd - THE HERD January 2021~ 2nd edition

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

Selected Highlighted News in the field of Autoimmune

Encephalitis January 2021 2nd edition

In this Issue~

  • *Announcements: February AE Awareness Month Guest Speakers, Virtual Art Show, Shop & Support IAES, AE Awareness Month Shirts, Puzzles featuring original art by AE patients at the AE Warrior Store
  • *Children’s Corner: Clinical Features, Treatment Strategies, and Outcomes in Hospitalized Children with Immune-Mediated Encephalopathies, Anesthesia for Pediatric Patients with Anti-NMDA-Receptor Encephalitis: a retrospective case series, AE Symptoms word search -for All Ages
  • * Most Popular Downloads: Encephalitic Presentation, Treatment strategies for autoimmune encephalitis
  • *COVID-19’s Impact on the AE Community: Tocilizumab in Patients Hospitalized with Covid-19 Pneumonia, Emergence of a Highly Fit SARS-CoV-2 Variant, COVID-19 Vaccines: Safe for Immunocompromised Patients?
  • *Most Popular Visual: Forgetting What you Are doing While You Are Doing it
  • *Featured AE Articles: Cost-Effectiveness of Routine Screening for Autoimmune Encephalitis in Patients With First-Episode Psychosis in the United States
  • *Clinician’s Corner: Comparisons Between Infectious and Autoimmune Encephalitis: Clinical Signs, Biochemistry, Blood Counts, and Imaging Findings
  • *COVID-19 Clinician’s Corner: Safety and Efficacy of the BNT162b2 mRNA Covid-19 Vaccine
  • *Open Access: A Tale of Two Brothers: Familial Voltage-Gated Potassium Channel Autoimmune Encephalitis


February ~ is AE Awareness Month

AE Awareness Month

Hear From the Experts

This year we are excited to announce that IAES will be hosting Webinar guest speaker presentations with experts addressing their specific area of focus. 

Belinda Lennox, DM FRCPsych, Professor of Psychiatry at Oxford Neuroscience will be presenting on Autoimmune Psychosis and Autoimmune Encephalitis. In 2019 Dr. Lennox was made the first woman Psychiatry Professor at Oxford. Dr. Lennox is a member of the IAES Medical Advisory Board.

For 12 years Dr. Lennox has been saying that it is time that all patients with acute-onset psychosis are screened for autoimmune encephalitis. That lumbar puncture should be offered to all patients with new-onset acute psychosis as part of the broader evaluation of their mental and physical health. She has advocated that the time for cultural change in psychiatric practice is upon us.  

Michael Sweeney, MD, Pediatric Neurologist Presenting February 26th, 2 pm Assistant Professor in the Division of Child Neurology at the University of Louisville, Kentucky will be presenting on Pediatric Autoimmune Encephalitis. He was the first pediatric neurologist to complete an autoimmune neurology fellowship at the University of Utah. Upon joining as faculty at the University of Louisville in 2016, he started the region’s first-ever clinic to treat children specifically with immune-mediated neurologic disorders. He also joined with colleagues in the Department of Neurology to start an adult autoimmune neurology clinic in conjunction with an established neuroimmunology program.

Eoin P. Flanagan, M.B, B.Ch., Mayo Clinic, Rochester will be doing a presentation on Autoimmune Encephalitis  Tentatively scheduled at this time of printing for February 2nd.

His clinical expertise and research are focused on the diagnosis and management of autoimmune neurological disorders with an emphasis on inflammatory autoimmune spinal cord disorders and their mimics including their MRI patterns. He also has an interest in the epidemiology of inflammatory demyelinating diseases of the central nervous system and autoimmune neurologic disorders.

Justin R. Abbatemarco, MD, Presenting on AE Treatments and long-term management. February 3rd, 11 am (MST).  Dr. Abbatemarco is currently at the University of Utah in Salt Lake City completing his fellowship in Autoimmune Neurology and will be joining the faculty at the Cleveland Clinic this July. 

Stefanie Rodenbeck, MD, Presenting on Autoimmune Epilepsy February 12, 11am MST

 Dr. Rodenbeck is currently at  the University of Utah in Salt Lake City completing her fellowship in Autoimmune Neurology and will be joining the faculty at the University of Indiana in July 2021. 

 IAES will be providing invites with zoom information out to the community in the coming days. 

3rd Annual Virtual Art Show

Your participation in our 3rd annual Virtual Art Show is a great way to raise awareness for AE.  Everyone has something they can share that will provide the public with insights into AE.  There are no limits to the type of art you can submit. All art mediums are welcome; still photography, poems, quotes, haiku, a meme you have created, music, pencil, coloring, painting, watercolor, fabric, clay. 

AE patients of all ages, caregivers, and our loved ones touched by AE are all encouraged to submit their expressions to be showcased in the virtual art show. 

Send in your art, multiple submissions are encouraged, with this submission form to  If you have several things you are sending in, please make sure you describe what each piece is so the correct story behind the art accompanies your piece. 

Past Shows are located under the ‘Raising AE Awareness’ tab on the IAES website. 

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.

AE Warrior Store New Arrivals

Description: Autoimmune Encephalitis Awareness Month, February 2021 2-sided designs. May be ordered in Men’s, Women’s, and Children’s sizes in a variety of styles including a hoodie, long sleeve shirts, and colors.

Back reads: Autoimmune Encephalitis (AE): is a type of brain inflammation where the body’s immune system attacks healthy brain cells.

Spread awareness with these stylish shirts. Wearing this shirt may begin a conversation that could lead to saving a life.  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.

Other new arrivals are six jigsaw puzzles featuring original art by autoimmune encephalitis patients.  A unique gift for any AE Warrior working on cognitive rehabilitation due to brain injury from AE & a wonderful collector’s item.

Visit #AE Warrior Gifts on the IAES website for some great ideas about how you can honor your AE Warrior or Caregiver during AE Awareness month.  Many offerings there are free. Don’t forget to get a deck of AE Trivia Cards for your AE Warrior, family members, or your Neurologist.


Children’s Corner 

Clinical Features, Treatment Strategies and Outcomes in Hospitalized Children with Immune-Mediated Encephalopathies

Seventy-five patients (23 ADEM and 52 AE) were identified. ADEM patients had a higher percentage of abnormal magnetic resonance imaging (MRI) findings (100% vs. 60.8%; p < 0.001) and a shorter time from symptom onset to diagnosis (6 vs. 14 days; p = 0.024). Oligoclonal bands, serum and cerebrospinal fluid (CSF) inflammatory indices were notably higher in AE patients. Nearly all patients received corticosteroids followed by plasmapheresis (PLEX) or intravenous immunoglobulin (IVIG) as first-line therapies, and treatment strategies did not differ significantly between groups. Second-line immune therapies were commonly employed in AE patients. Finally, AE patients had non-significant trends toward longer hospital lengths of stay (21 vs. 13 days) and a higher percentage of neurological disability (mRS greater than 2) at hospital discharge (59.6% vs. 34.8%).


Although ADEM and AE patients may have similar presenting symptoms, we found significant differences in frequency of imaging findings, symptom duration, laboratory and CSF profiles which can assist in distinguishing between the diagnoses. Patients in both groups were treated with a combination of immunomodulating therapies and neurological disability was common at hospital discharge.

Anesthesia for Pediatric Patients with Anti-NMDA-Receptor Encephalitis: a retrospective case series

Conclusion: Although pediatric patients with anti-N-methyl-D-aspartate-receptor encephalitis experienced vital sign changes with anesthesia, they were not clinically significant, and they behaved similarly to controls. Disease severity may be a risk factor for perioperative complications.

Word Search: AE Symptoms

Word Search puzzles are a wonderful exercise to do for brain injury rehabilitation from AE.
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 AE Symptoms puzzle and others that you will find as free downloads on the ‘Rehab Cognitive Exercises’ page on the IAES website.

Most Popular Download

Encephalitic Presentation

Treatment strategies for autoimmune encephalitis

COVID-19’s Impact on the AE Community

Tocilizumab in Patients Hospitalized with

Covid-19 Pneumonia

A total of 389 patients underwent randomization, and the modified intention-to-treat population included 249 patients in the tocilizumab group and 128 patients in the placebo group. 

Death from any cause by day 28 occurred in 10.4% of the patients in the tocilizumab group and 8.6% of those in the placebo group (weighted difference, 2.0 percentage points; 95% CI, –5.2 to 7.8). In the safety population, serious adverse events occurred in 38 of 250 patients (15.2%) in the tocilizumab group and 25 of 127 patients (19.7%) in the placebo group.


In hospitalized patients with Covid-19 pneumonia who were not receiving mechanical ventilation, tocilizumab reduced the likelihood of progression to the composite outcome of mechanical ventilation or death, but it did not improve survival. 

Emergence of a Highly Fit SARS-CoV-2 Variant


Patients infected with D614G-associated SARS-CoV-2 are more likely to have higher viral loads in the upper respiratory tract than patients infected with virus strains without the mutation, but disease severity is not affected.

COVID-19 Vaccines: Safe for Immunocompromised Patients?

At a special session held during the recent annual meeting of the American Society of Hematology, Anthony Fauci, MD, the nation’s leading infectious disease expert said that individuals with compromised immune systems, whether because of chemotherapy or a bone marrow transplant, should plan to be vaccinated when the opportunity arises.

Most Popular Visual~






Forgetting What you Are doing While You Are Doing it


Featured AE Articles~

Cost-Effectiveness of Routine Screening for Autoimmune Encephalitis in Patients With First-Episode Psychosis in the United States

Objective: Autoimmune encephalitis (AE) is a highly treatable neurologic condition that can cause psychosis. Screening for AE is not currently recommended in routine workup for first-episode psychosis (FEP), owing partly to the high cost of testing for AE-associated neuronal autoantibodies.

Results: Routine screening led to mean QALY gains of 0.008 among all patients and 0.174 among the subgroup of patients with neuronal autoantibodies. Mean costs increased by $780 from a societal perspective and $1,150 from a health care sector perspective, resulting inincremental cost-effectiveness ratios (ICERs),of $99,330/QALY and $147,460/QALY, respectively. Incorporating joint input data uncertainty, the likelihood routine screening has an ICER ≤ $150,000/QALY was 55% from a societal perspective and 37% from a health care sector perspective. The model parameter with the greatest contribution to overall uncertainty was the effectiveness of immunotherapy relative to antipsychotics.

Conclusions: Routine screening for AE in patients with FEP may be cost-effective in the United States. As further immunotherapy effectiveness data become available, a more definitive recommendation to perform routine screening could be warranted.

Clinician’s Corner

Comparisons Between Infectious and Autoimmune Encephalitis: Clinical Signs, Biochemistry, Blood Counts, and Imaging Findings

Infectious encephalitis (IE) and autoimmune encephalitis (AE) are symptomatically similar in clinic, however essentially different in pathogenesis. Therefore, the objective of this study was to identify specific features to distinguish the two types of encephalitis for early effective diagnosis and treatments through a comparative analysis.

Conclusion: Involuntary movement and memory deficits were more specifically present in AE patients. CSF Pandy, blood routine test, and hippocampus lesions detections were potential markers for distinguishing AE and IE. Further, CSF LDH and serum calcium levels were potentially useful to distinguish subgroups of encephalitis.


COVID-19 Clinician’s Corner



Safety and Efficacy of the BNT162b2 mRNA Covid-19 Vaccine



A two-dose regimen of BNT162b2 conferred 95% protection against Covid-19 in persons 16 years of age or older. Safety over a median of 2 months was similar to that of other viral vaccines.

A Tale of Two Brothers: Familial Voltage-Gated Potassium Channel Autoimmune Encephalitis

This case is unique because it is the first reported case of familial VGKC autoimmune encephalitis. Both brothers presented with a nonspecific prodrome of headache and fatigue with neuropsychiatric symptoms. Patient 1 had more motor symptoms and responded well to initial treatment. Patient 2 had a more indolent course developing symptoms over weeks, with more psychiatric symptoms; he required rituximab for further immunosuppression. The differences between the presentations of these brothers could be explained by a multifactorial autoimmune pathophysiology: similar yet different genetics and antigen processing and presentation; perhaps, different antigen targets on the VGKC channel, distinct medical history, same family, but different family stressors.

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. 

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.

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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