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THE HERD February AE Awareness Month 2021 Special Edition

theherd - THE HERD February AE Awareness Month 2021 Special Edition

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AE Awareness Month

February 2021 Special Edition

In this Issue~

  • *Announcements: AE Awareness Month  Speakers Series Webinar Recordings Now Available, Register for two upcoming AE Webinars, AE Studies Seek Your Participation
  • * AE Awareness Month On-Going Events: The 3rd Annual Virtual Art Show, This is My Time, 2021’s AE Awareness Video, AE Awareness Shirts/hoodies
  • *Children’s Corner: Pediatric autoimmune encephalitis associated with anti-glutamic acid decarboxylase 65 antibody: two cases report and literature review, Anesthesia for Pediatric Patients with Anti-NMDA-Receptor Encephalitis: a retrospective case seriesAE Medical Abbreviations word search – for All Ages 
  • *Most Popular Downloads:  Handout Cytokine storm: A detrimental overreaction, Living with Brain Injury
  • *COVID-19’s Impact on the AE Community: Does my MS (or AE) medication affect my ability to respond to vaccines?, Masks and Face Coverings for the Lay Public
  • *Featured AE Articles: Clinical features of pediatric and adult autoimmune encephalitis: A multicenter sample
  • *Clinician’s Corner: A new antibody found in AE~  Ca V α2δ Autoimmune Encephalitis: A Novel Antibody and its Characteristics
  • *COVID-19 Clinician’s Corner: Emergency Department Management of COVID-19: An Evidence-Based Approach
  • *Open Access: Genetic link to anti-NMDAr ~IRAK4 Deficiency Presenting with Anti-NMDAR Encephalitis and HHV6 Reactivation

February ~ AE Awareness Month


Webinar Recordings From Speakers Series Now Available

The first 4 webinars in our AE Awareness Month Speakers Series has been a rousing success. Attendees representing 12 countries took part. IAES is so pleased to have gathered experts of such caliber to present on the key areas of autoimmune encephalitis. The 5 speakers each discuss a topic, that when combined, provide 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.  

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 

Register for These Upcoming AE Webinars

Michael Sweeney, MD, Pediatric Neurologist Presenting February 26th, 3 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.

The Euroimmun Academy Presents Autoimmune Encephalitis Webinar February 25th

The Euroimmun Academy is proud to present the upcoming “Neurology Webinar Series” #2 in the series “Autoimmune Encephalitis” taking place on February 25.

This webinar is open to patients, families, and physicians. Register for this webinar on Autoimmune Encephalitis taking place on February 25.

About the presenters~

Robert Kadish, MD

Dr. Robert Kadish is an assistant professor of neurology at the University of Utah in the division of Neuroimmunology. He received his undergraduate degree in Biology at Birmingham-Southern College and obtained his medical degree from The University of Alabama School of Medicine. He completed a neurology residency at the University of Louisville and his fellowship in Autoimmune Neurology at The University of Utah. Clinical focuses include Autoimmune Neurology, Neuroimmunology, General Neurology, and the use of technology and diagnostics in medicine. He sees patients with conditions such as multiple sclerosis, neuromyelitis optica, neurosarcoidosis, and autoimmune encephalitis. Throughout his career, he has taken a special interest in trainee education and is excited to continue this trend at the University of Utah where he is the associate director for the neurology medical student clerkship and has designed and implemented a structured neuroimmunology and autoimmune neurology curriculum for neurology residents. Ongoing interests include Neuromyelitis Optica Spectrum Disorders, non-invasive outcomes measures in various immune-mediated conditions, and CNS disorders.

Stanley Naides, MD

Stanley Naides, MD, FACP, FACR is a clinician-scientist and consultant. Dr. Naides is a board-certified internist with subspecialty certification in Rheumatology. Dr. Naides completed fellowships in rheumatology at the University of California and in immunology research at Harvard Medical School. He then joined the Division of Rheumatology, University of Iowa where he became a tenured Associate Professor and was the founding Director of the interdisciplinary Helen C. Levitt Center for Viral Pathogenesis and Disease. He then joined the Quest Diagnostics Nichols Institute as Medical Director, Immunology R&D where his portfolio included new assay development and oversite of reference laboratory clinical testing in immunology, allergy, neuroimmunology, electrophoresis, andrology, and non-malignant cell flow cytometry. He was most recently the Director of Scientific Affairs, EUROIMMUN US, a PerkinElmer company based in New Jersey. Dr. Naides oversaw research, scientific communications, and publications for EUROIMMUN US. Dr. Naides is the author/editor of more than 100 peer-reviewed papers, book chapters, books, and reviews.

Two AE Studies Seek Your Participation

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


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. 


On-Going Events During AE Awareness Month

3rd Annual Virtual Art Show

The IAES Virtual Art Show has always been a favorite in the autoimmune encephalitis community.  This year’s show includes a wide variety of art from AE patients, caregivers, and family members. 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. 

IAES would like to thank everyone who participated. 

This is Our Time AE Awareness Video 2021

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.

The video features AE patients of all ages from around the world. By the end of the video, the viewer has an understanding of what AE is, how quickly it impacts people’s lives when it strikes, and what is required to raise awareness that will lead to saving lives and a cure.  

IAES has purchased the rights to the song: This Is Our Time.

AE Awareness Month Shirts ~AE Warrior Store

Description: Autoimmune Encephalitis Awareness Month, February 2021 2-sided designs. Items 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.


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.

Pay Tribute to AE Patients and Caregivers During AE Awareness Month

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

Pediatric autoimmune encephalitis associated with anti-glutamic acid decarboxylase 65 antibody: two case report and literature review

Conclusions: Pediatric anti-GAD65 antibody-associated autoimmune encephalitis is a rare but treatable disease, including limbic encephalitis and extra limbic encephalitis. The most common clinical manifestations are seizures and memory impairment. Early diagnosis and immunotherapy can improve the symptoms in a short time. But patients with limbic encephalitis often had refractory epilepsy in the chronic phase, and have a poor long-term outcome.


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: Medical Abbreviations

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 Medical Abbreviations word search puzzle and others that you will find as free downloads on the ‘Rehab Cognitive Exercises’ page on the IAES website.

Most Popular Download

Handout ~ Cytokine storm: A detrimental overreaction

Living With Brain Injury  Handout

COVID-19’s Impact on the AE Community

Does my MS (or AE) medication affect my ability to respond to vaccines?

Multiple sclerosis (and AE) medications can impact your body’s ability to mount an immune response to a vaccine. Most trials looking at responses to vaccines in MS patients measure antibodies in the blood which is driven by B cell immune response. You may be able to mount an effective T cell response to a virus, but much harder to measure. Different MS (and AE) medications (DMTs) might weaken your ability to develop a protective level of immunity from a vaccine.

COVID-19 vaccines:

For COVID-19, the Pfizer and Moderna vaccines are mRNA vaccines. The mRNA contains instructions for our own body to make a harmless “spike” protein.  This spike protein is on the surface of the COVID-19 virus. The spikes on the surface of this COVID-19 coronavirus creates a “corona” (derived from the Latin word for crown).  The mRNA is surrounded by a lipid (fatty) nanoparticle that allows it to enter cells of the body when injected into the muscle.  Once mRNA is in the cells, the cells can create their own spike proteins on their surface. The body’s immune system that reacts to these foreign spike proteins leading to immunity with memory T and B cells.  These COVID-19 vaccinations result in a robust immune response to this spike protein that provides up to 95% immunity from the real COVID-19 infection, caused by the SARS-CoV-2 virus.


Masks and Face Coverings for the Lay Public

A Narrative Update

This narrative review has summarized a heterogeneous body of evidence on population masking in the context of the COVID-19 pandemic. Evidence that the virus can be airborne (and therefore be inhaled) and that masking policy, when effectively delivered, save lives is now strong. There is no evidence of serious harms from masks and face coverings, although discomfort, communication difficulties, and environmental effects are not insignificant. Psychological effects, which are culturally framed, shape acceptance and adherence.

As masking has become recommended or mandated, there is an urgent research agenda to develop alternatives that are more efficient, more comfortable, more acceptable, less disruptive of normal communication practices, and more environmentally friendly than currently available products.

Until the threat of the pandemic is behind us, we recommend that the public wear masks or face coverings in situations and settings where risk for transmission is high—notably where ventilation is poor when large numbers of persons are gathered, when some are vocalizing (especially singing or shouting), and when contact is prolonged.

Featured AE Article~

Clinical features of pediatric and adult autoimmune encephalitis: A multicenter sample

Objective: Describe the clinical presentation, seizure type, EEG, and sleep patterns in pediatric and adult patients with AE.

Conclusion: Pediatric patients with AE were more likely to present with psychiatric symptoms, sleep disturbances, focal seizures, and/or status epilepticus compared to adults (p < 0.05). Insomnia and hypersomnia are common sleep problems associated with AE that should be screened early in the diagnostic evaluation. Further studies can be performed to explore the relationship between sleep disturbances and long-term cognitive effects and the incidence of chronic epilepsy in this subset of patients.


Clinician’s Corner

A New Antibody has been found in AE: Ca V α2δ Autoimmune Encephalitis: A Novel Antibody and its Characteristics

Researchers continue to look for new antibodies in AE. Discovering novel antibody enables diagnosis and early treatment of the autoimmune encephalitis. This group discovered a novel antibody targeting a synaptic receptor and characterized the pathogenic mechanism.

Two patients had a novel antibody against CaV α2δ (voltage-gated calcium channel alpha-2/delta subunit). The patient samples stained neuropils of the hippocampus, basal ganglia, and cortex in rat brain sections and bound to a CaV α2δ-overexpressing cell line. Knockdown of the CaV α2δ expression in cultured neurons turned off the immunoreactivity of the patients’ antibody to the neurons. The patients were associated with preceding meningitis or neuroendocrine carcinoma and responded to immunotherapy. In cultured neurons, the antibody reduced neurotransmitter release from presynaptic nerve terminals by interfering with tight coupling of calcium channels and exocytosis.

Interpretation: Here, we found a novel autoimmune encephalitis associated with anti-CaV α2δ antibody. Further analysis of the antibody in autoimmune encephalitis might promote the early diagnosis and treatment. 

COVID-19 Clinician’s Corner 


Emergency Department Management of COVID-19: An Evidence-Based Approach


Evidence-based practice in the approach to COVID-19 is mercurial. Current literature focuses on the inpatient evaluation, treatment, and disposition of these patients. Interpretation and adaptation of current recommendations to patients in the ED is a crucial target for future literature. After our review of available literature, we have proposed an ED-specific flowsheet to assist clinicians during this time of medical ambiguity (Figure 3).

Genetic link to anti-NMDAr ~IRAK4 Deficiency Presenting with Anti-NMDAR Encephalitis and HHV6 Reactivation

IRAK4 deficiency is an inborn error of immunity predisposing patients to invasive pyogenic infections. Currently, there is no established simple assay that enables precise characterization of IRAK4 mutant alleles in isolation. Anti-N-methyl-D-aspartate receptor (NMDAR) encephalitis is an autoimmune condition that is characterized by psychiatric symptoms, involuntary movement, seizures, autonomic dysfunction, and central hypoventilation. It typically occurs in adult females associated with tumors. Only a few infantile cases with anti-NMDAR encephalitis have been so far reported. We identified a 10-month-old boy with IRAK4 deficiency presenting with anti-NMDAR encephalitis and human herpes virus 6 (HHV6) reactivation. The diagnosis of IRAK4 deficiency was confirmed by the identification of compound heterozygous mutations c.29_30delAT (p.Y10Cfs*9) and c.35G>C (p.R12P) in the IRAK4 gene, low levels of IRAK4 protein expression in peripheral blood, and defective fibroblastic cell responses to TLR and IL-1 (TIR) agonist. We established a novel NF-κB reporter assay using IRAK4-null HEK293T, which enabled the precise evaluation of IRAK4 mutations. Using this system, we confirmed that both novel mutations identified in the patient are deleterious. Our study provides a new simple and reliable method to analyze IRAK4 mutant alleles. It also suggests the possible link between inborn errors of immunity and early onset anti-NMDAR 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.

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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