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THE HERD June 2021 2nd edition

theherd - THE HERD June 2021 2nd edition

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

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

In this Issue~


  • *Announcements: #AETuesdayTries, AE Study in Australia seeks your participation, From the Lane to the Race, New book out in Italian, New AE Wingman Collection 
  • *Children’s Corner (for all ages): Summer Camp Opportunities, Impact Of Disabilities On Families
  • *ABI Rehabilitation: Brain HQ – Brain Training that works, Hope, Faith, Bravery, Love Coloring page
  • Useful Tips for the AE Warrior:  The Web’s most current and comprehensive directory of Patient Assistance Programs 
  • Most Popular Visual Downloads: 5 types of AE and what is seen in the ICU, 10 Ways to Support a Person with Autoimmune Encephalitis
  • *COVID-19’s Impact on the AE Community:  Preliminary Findings of mRNA Covid-19 Vaccine Safety in Pregnant Persons, Neurological complications in pediatric patients with SARS-CoV-2 infection: a systematic review of the literature
  • *Featured AE Article: Steroid‐induced osteoporosis: how can it be avoided?, How Much GAD65 Do You Have? High Levels of GAD65 Antibodies in Autoimmune Encephalitis
  • *Clinician’s Corner: Bortezomib in anti-N-Methyl-d-Aspartate-Receptor (NMDA-R) encephalitis: A systematic review
  • *COVID-19 Clinician’s Corner: Pediatric anti-NMDA receptor encephalitis associated with COVID-19
  • *Open Access: Updated Diagnostic Criteria for Paraneoplastic Neurologic Syndromes 
  • *AE Trivia Cards: The single most important educational/rehabilitation tool for AE
  • *AE Warrior Store: See our new AE mug and hat collections
  • *Shop & Support IAES: Sign up for PayPal’s #GiveAtCheckOut and Amazon Smiles

    IAES launched its first “Tuesday Tries” on May 25th. AE patients and caregivers were so grateful to meet, share and validate each other’s experiences and share their personal stories.

    The next monthly zoom meet-up will take place June 29th and will always take place the last Tuesday of each month.  Join us to celebrate your critical milestones in recovery and care and help yourself  build a more resilient network!

    Your facilitator, 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. IAES would like to extend our congratulations to Tessa for having just been named President-elect of the Maryland Career Development Association.

    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

    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


    anti-NMDAr patient, Alessia Bellino, Publishes Book About her Journey


    From The Lane to the Race

    Currently out in Italian only.

    “From the lane to the Race” tells how a path of recovery from an illness can be compared to a real marathon, made up of training, stages, fatigue, satisfaction and a goal. Suddenly struck by anti-NMDAr Autoimmune Encephalitis in 2015, Alessia Bellino finds herself facing a long period of convalescence to recover memory, skills, her life, and then heal and even change, grow and reinvent herself.

    Strengthened by the experience as a runner and her passions, she tells kilometer after kilometer, through events, reflections and freehand drawings, the stages of the marathon to heal that brought her here, to share her story so that she can be the inspiration and encouragement for other people.

    AE Warrior Store

    New Arrivals ~ The AE Wingman Collection

    New arrivals at The AE Warrior Store. We are pleased to present ~The AE Wingman Collection.  Get some  swag for your spouse, partner, BFF, caregiver, or advocate that is sure to bring a smile and remind them of how proud you are of their fighting spirit and dedication to helping you on your AE journey. 

    Any AE Warrior knows that we are NOTHING without our #AEWingman’s support and guidance. Our Wingman is the person who has been right by our side encouraging us every inch of our AE journey. 

    The moniker “AE Wingman” should invoke a sense of pride and reaffirmation of the courage and determination it has taken to advocate so long and hard to help us regain health.

    Don’t forget to #GiveAtCheckOut if you purchase your gift through PayPal! (See: Shop and Support IAES Through PayPal’s #GiveAtCheckOut program below). 

    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.

    Children’s Corner

    Summer Camp Opportunities

    25 Summer Camps for Individuals With Special Needs


    ‘Tis the season to register for summer camps.  If you think that your child’s special needs will prevent him or her from participating in a summer camp, it’s time to think again.  Many camps offer specialized medical care for specific disabilities or one-on-one buddies, while other camps provide tutoring for individuals with learning disabilities in addition to outdoor activities.  Here’s a run-down of the most popular camps for kids and adults with special needs.

    Not on the list and camps we highly recommend are: 

    Double H Ranch ~ a seriously fun camp. Provides specialized programs and year-round support for children and their families dealing with life-threatening illnesses.  

    Serious Fun Children’s Network

    is an international family of camps and programs that provide life-changing experiences to children with serious medical conditions, always free of charge. They provide children living with serious illnesses with a spectacular camp experience and high-quality medical care, all in the safest and most supportive environment. And for the kids, it’s high-flying, friendship-building, memory-making fun.

    Impact Of Disabilities On Families

    When a family member develops Autoimmune Encephalitis it can change family roles. The outcome may be uncertain with recovery occurring over time. This may require family to adjust their roles as the person recovers. These issues are seldom addressed or discussed but are felt by all family members. This article discusses how disability effects families both if the disabled family member is a child or if the disability occurs when the individual is an adult. It may help families realize the role changes that occur and help provide some understanding.

    ABI Rehabilitation From AE

    Brain HQ – Brain Training that works


    Are you working on your cognitive rehabilitation from AE?

    BrainHQ is your online headquarters for working out your brain. Think of it as a personal gym, where you exercise your memory, attention, brain speed, people skills, intelligence and navigation instead of your abs, delts, and quads. Just as our bodies require care and exercise over the course of life, so do our brains—especially when in recovery from Autoimmune Encephalitis and/or dealing with acquired brain injury from your AE. BrainHQ provides the exercise your brain needs for your rehabilitation.

    Hope, Faith, Bravery, Love ~ Coloring Page

    You may have noticed that IAES has several word searches and puzzles on the Rehabilitation/Cognitive exercise page of our website.  

    Think positively and challenge yourself with this word search and others that you will find as free downloads. You are sure to become inspired and challenged in your recovery efforts. 

    Useful Tips for Patients & Families

    The Web’s most current and comprehensive directory of Patient Assistance Programs

    Patient assistance programs are run by pharmaceutical companies to provide free medications to people who cannot afford to buy their medicine. RxAssist offers a comprehensive database of these patient assistance programs, as well as practical tools, news, and articles so that health care professionals and patients can find the information they need. All in one place.

    Most Popular Download

    Understanding Autoimmune Encephalitis

    in the ICU


    This is an easy-to-follow graphic that focuses on 5 types of AE and what is seen in the ICU.
    It lists the history of the illness, what triggers that type of AE (what we know so far), signs, test results and treatments recommended.

    COVID-19’s Impact on the AE Community

    Preliminary Findings of mRNA Covid-19 Vaccine Safety in Pregnant Persons



    A total of 35,691 v-safe participants 16 to 54 years of age identified as pregnant. Injection-site pain was reported more frequently among pregnant persons than among nonpregnant women, whereas headache, myalgia, chills, and fever were reported less frequently. Although not directly comparable, calculated proportions of adverse pregnancy and neonatal outcomes in persons vaccinated against Covid-19 who had a completed pregnancy were similar to incidences reported in studies involving pregnant women that were conducted before the Covid-19 pandemic.

    Conclusions: Preliminary findings did not show obvious safety signals among pregnant persons who received mRNA Covid-19 vaccines. However, more longitudinal follow-up, including follow-up of large numbers of women vaccinated earlier in pregnancy, is necessary to inform maternal, pregnancy, and infant outcomes.


    Neurological complications in pediatric patients with SARS-CoV-2 infection: a systematic review of the literature



    Highlights the large range of neurological manifestations and their presumed pathogenic pathways associated with SARS-CoV-2 infection in children. Nervous system involvement could be isolated, developing during COVID-19 or after its recovery, or arise in the context of a MIS-C. The most reported neurological manifestations are cerebrovascular accidents, reversible splenial lesions, GBS, benign intracranial hypertension, meningoencephalitis; ADEM is also a possible complication, as we observed in our patient. Further studies are required to investigate all the neurological complications of SARS-CoV-2 infection and their underlying pathogenic mechanism.

    Featured AE Article~

    Steroid‐induced osteoporosis: how can it be avoided?

    If you are on steroids for your AE. Talk to you doctor about supplemental calcium, vitamin D and hormone replacement. Additionally, eat a diet rich in calcium and vitamin D.

    Summary: Patients who will remain on glucocorticoids for more than a few weeks are clearly at risk for osteoporosis. Steroid‐induced bone loss should be prevented, and if present, should be treated. Exercise programs and the maintenance of a good nutritional status with an adequate calcium and phosphate intake and a restricted sodium intake are recommended. Supplementation with calcium and vitamin D should be given to all patients to restore normal calcium balance. Hormone replacement therapy should be considered in amenorrhoeic women. Patients with medium‐ to high‐dose steroid therapy should receive bisphosphonates or an activated form of vitamin D. Therapies should be continued as long as the patients are on steroids. To ensure that prevention of steroid‐induced osteoporosis is developing as the standard of care for patients receiving long‐term steroid treatment, a broad educational effort directed to physicians of various specialties is needed.

    Table 1 provides dose recommendations for Calcium, Vitamin D and hormone replacement.

    How Much GAD65 Do You Have? High Levels of GAD65 Antibodies in Autoimmune Encephalitis

    Objective: Antibodies against glutamic acid decarboxylase 65 (anti-GAD65) are associated with a number of neurologic
    syndromes. However, their pathogenic role is controversial. Our objective was to describe clinical and paraclinical characteristics of anti-GAD65 patients and analyze their response to immunotherapy.

    Conclusion: Most patients with high anti-GAD65 concentrations (>10 000 IU/mL) showed some improvement after
    immunotherapy, unfortunately without complete recovery. Serum antibody concentrations’ course might be useful to monitor response. In patients with low anti-GAD65 concentrations, especially in those without typical clinical phenotypes, diagnostic alternatives are more likely.

    10 Ways To Support A Person With Autoimmune Encephalitis

    Clinician’s Corner

    Bortezomib in anti-N-Methyl-d-Aspartate-Receptor (NMDA-R) encephalitis: A systematic review



    • Proteasome inhibitor bortezomib could have a role in anti NMDA receptor encephalitis.

    • Half of patients treated with bortezomib improved, but side effects were common.

    • Larger and more homogeneous cohorts should be included in future trials.

    N-methyl-d-aspartate receptor (NMDAR) encephalitis is a potentially treatable condition, although a small proportion of patients remains refractory to immunotherapy. Bortezomib is a proteasome inhibitor that has a promising role in autoimmune conditions. We performed an independent PubMed search employing “Anti-N-Methyl‑D-Aspartate encephalitis AND bortezomib”, including papers published between January 1st, 2007 to April 15th, 2021. Fourteen articles were included, with 29 patients. 16 patients (55.2%) had a favorable outcome after bortezomib and 11 (37.9%) patients developed side effects. Quality of studies was overall poor and future trials should aim to include more homogeneous and larger cohorts.

    COVID-19 Clinician’s Corner


    Pediatric anti-NMDA receptor encephalitis associated with COVID-19

    Anti-N-methyl-D-aspartate receptor encephalitis is a clinical condition characterized by acute behavioral and mood changes, abnormal movements, autonomic instability, seizures, and encephalopathy. We describe a 7-year-old boy diagnosed with Autoimmune Encephalitis due to NMDAR antibody in association with severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) (coronavirus disease 2019) (COVID-19), without pulmonary involvement or fever.

    The diagnosis of Autoimmune Encephalitis was strongly considered at our patient’s initial presentation. The marked lymphopenia precluded steroid treatment and IVIg was started first along with an antiviral drug and antibiotics. Lymphopenia is a well-known finding in Covid-19 infection. Lymphocyte counts started to increase and pulse steroid treatment was started on the 10th day of admission, resulting in more rapid clinical improvement. Despite a few days’ delay, our patient’s diagnosis and treatment beginning within 4 days of symptoms can still be considered as relatively early. Although his clinical picture worsened in the first week, the normal MRI findings at admission and follow-up and prompt response to treatment also support timely diagnosis and intervention in this case.

    We believe this report can serve as an example of pediatric Autoimmune Encephalitis associated with COVID-19 and contribute to the clinical perspective, management, and treatment of neurological complications observed during the pandemic.

    Updated Diagnostic Criteria for Paraneoplastic Neurologic Syndromes


    Objective The contemporary diagnosis of paraneoplastic neurologic syndromes (PNSs) requires an increasing understanding of their clinical, immunologic, and oncologic heterogeneity. The 2004 PNS criteria are partially outdated due to advances in PNS research in the last 16 years leading to the identification of new phenotypes and antibodies that have transformed the diagnostic approach to PNS. Here, we propose updated diagnostic criteria for PNS.

    Results The panel proposed to substitute “classical syndromes” with the term “high-risk phenotypes” for cancer and introduce the concept of “intermediate-risk phenotypes.” The term “onconeural antibody” was replaced by “high risk” (>70% associated with cancer) and “intermediate risk” (30%–70% associated with cancer) antibodies. The panel classified 3 levels of evidence for PNS: definite, probable, and possible. Each level can be reached by using the PNS-Care Score, which combines clinical phenotype, antibody type, the presence or absence of cancer, and time of follow-up. With the exception of opsoclonus-myoclonus, the diagnosis of definite PNS requires the presence of high- or intermediate-risk antibodies. Specific recommendations for similar syndromes triggered by immune checkpoint inhibitors are also provided.

    Conclusions The proposed criteria and recommendations should be used to enhance the clinical care of patients with PNS and to encourage standardization of research initiatives addressing PNS.

    AE Trivia Playing Cards

    The perfect companion for patients, Caregivers & Therapist

    Doctor Recommended

    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. 

    Shop & Support IAES Through PayPal’s #GiveAtCheckOut

    Have you wanted to support IAES, Autoimmune Encephalitis awareness, and the AE Warrior that you love?

    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 of an opportunity to give $1 to IAES.

    Simply go to your PayPal account and select “set favorite charity”, and choose International Autoimmune Encephalitis Society.  When you make a purchase and check out, an option comes up that asks if you would like to give $1 to IAES? 

    Help create the positive change you envision for the AE Community by donating your change.

    Get that great deal online and support IAES at the same time!

    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.

    This simple act of kindness, will support the work we do and advance our ability to service the community.

    Smilematic, is a handy tool that will automatically redirect you to when you are shopping so you never have to worry about forgetting to type it in to ensure benefits go to IAES.

    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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