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THE HERD November 2021 2nd edition

theherd - THE HERD November 2021 2nd edition

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

Selected Highlighted News in the field of Autoimmune Encephalitis~ November 2021 2nd Edition

In this Issue~


  • *Announcements: National Family Caregiver Month, AE Awareness Month Merchandise, The Well-Being Gratitude Journal#AETuesdayTries
  • *Children’s Corner (for all ages): Autoimmune Encephalitis in Children: From Suspicion to Diagnosis, Thanksgiving Word Search Puzzles
  • *ABI Rehabilitation: Caregiver Themed Word Search 
  • *Helpful Tips for the AE Warrior:  Cognitive Problems: A Caregiver’s Guide, AmazonSmiles 
  • *Most Popular Visual Downloads: Grief, LGI1 Autoimmune Encephalitis 
  • *COVID-19’s Impact on the AE Community: PET coregistered with MRI imaging of anti-NMDAR encephalitis patient with SARS-CoV-2 infection
  • *Featured AE Article: Psychosis or Something More?  
  • *Clinician’s Corner: Fatigue in Survivors of Autoimmune Encephalitis
  • *COVID-19 Clinician’s Corner: Webinar- Neurology on the Leading Edge: Post Pandemic Neurology: Solutions for Lasting Change in Health Care
  • *Open Access: CSF Findings in Acute NMDAR and LGI1 Antibody-Associated Autoimmune Encephalitis
  • *AE Trivia Cards:  The single most important educational/rehabilitation tool for AE
  • *AE Warrior Store: See our new AE Wingman and hat collections
  • *Shop & Support IAES: Sign up for PayPal’s #GiveAtCheckOut and Amazon Smiles



National Family Caregiver Month  

Royal IAES Registry Certificate for Caregivers

Do you have a caregiver in your life who has devoted themselves to seeing that your best interests are their top priority? Many of us are only alive today because of that special person who loves us so much, they were there when we could not take care of ourselves.

If you have someone in your life, I hope you honor them with this certificate. The Royal IAES Registry designates the AE Sentinel (Caregiver) with a Royal Title.  In recognition of their heroism under fire. The Royal IAES Registry is the highest honor that can be bestowed upon caregivers engaged in the mighty battle of autoimmune encephalitis.

Certificates are normally five dollars but are free via The Herd throughout the month of November.  We recommend you download your certificate on a high quality paper of your choosing to bring it more visual appeal. 

Check out the ‘AE Warrior Gifts’ page on the IAES website for other inspiring ideas for your caregiver this month. Download a free candy bar wrapper with a caregiver design or create a Caregiver Survival kit. You will find other caregiver gift options at the AE warrior Store. 

AE Awareness Month Merchandise

#BelieveYouCan is the 2022 theme for Autoimmune Encephalitis Awareness Month, February 2022. Feel empowered in believing you can recover from AE, and create change in the world that raises awareness leading to a cure. 

T-shirts have a 2-sided design and may be ordered in a variety of styles (see right side for options). The design on the back of the Tee has the IAES zebra logo and the wording  ‘Autoimmune Encephalitis Awareness Month 02-2022’.

These products may begin a conversation that could lead to saving a life.  

The proceeds of your purchase support AE research and will have an immediate positive impact on patients, caregivers, and families who are fighting this rare brain disease. 

The Well-Being Gratitude Journal

IAES is pleased to provide you with this wonderful supportive tool appropriate for anyone touched by Autoimmune Encephalitis. This guided gratitude journal is a science-based practice for improving your health and happiness. The Well-Being Warrior Journal, written by Tessa McKenzie, IAES Chief Resilience Officer, and Tabitha Orth, IAES President, prompts you to reflect on what you are grateful for each day.  

Utilize the journal by challenging yourself to a 21-day commitment described. Spend two minutes a day scanning the world for three new things you’re grateful for over a 21-day period.  We instinctively scan our environment for threats. This powerful exercise trains your brain to scan the world in a new pattern of scanning for positives. It’s the fastest way to teach optimism.

 We are all capable of learning new behaviors and changing our brain patterns. Research has shown that a person with a low-level of pessimism on day 1 of this 21-day exercise will admit to feeling a low-level of optimism by day 21. When dealing with a life challenge as overwhelming as AE, it is important to take care of your mental health, feel supported in your ability to manage the crisis and feel empowered and truly resilient.   

The Journal has a left-hand margin width for a 3-hole punch, so it can be inserted into a notebook. Coloring has been shown through research to mitigate symptoms of physical and emotional distress and is a recommended rehabilitation activity for AE patients. Color in the cover design to personalize your journal while relaxing into a pleasant past time. 



Our program “Tuesday Tries” addresses the emotional support and rehabilitation AE patients and caregivers require in recovering from Autoimmune Encephalitis by building your resilience. The program utilizes science-based exercises from the work of PERMA; Seligman, 2012.  

IAES wants to foster your capacity in the belief that better days are ahead! “Tuesday Tries” is about practicing a strengths-based approach by “normalizing the try;” celebrating critical milestones in the recovery and care of AE patients and caregivers in order to build a more resilient network of care. 

A workbook organizer, “Growing Your Resilience” has been created to accompany the #AETuesdayTries program and is located on the ‘Apps and Tools for AE Warriors’ page in the section: ‘Building Your Resilience’ on the IAES website under the ‘For Patients’ tab. A link to download the organizer is also provided within your e-mail confirmation when you register.

The next monthly #AETuesdayTries zoom meet-up will take place November 30th and will always be the last Tuesday of each month.  Join AE patients and caregivers of all ages and stages in their AE journey.  Receive insights and encouragement from others and celebrate your critical milestones in recovery and care while  building a more resilient personal AE 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. 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.

Children’s Corner

Autoimmune Encephalitis in Children: From Suspicion to Diagnosis

Highly Recommended

This article reviews types of AE, causes, diagnosis, differential diagnosis, treatment and prognosis. 


Autoimmune encephalitis is an inflammatory, rapid, progressive disease that requires extensive and prompt workup. Patients should have neuroimaging, EEG, lumbar puncture, and antibody testing on serum and CSF at the same time that treatment is initiated based on a clinical diagnosis. Further investigation is necessary in search of cancer, central nervous system inflammation, infection, and other alternative etiologies. Early diagnosis and effective treatment might improve long-term outcomes.

Thanksgiving Word Search puzzle


Word Search puzzles are a wonderful exercise to do for brain injury rehabilitation from AE. These word scearch worksheets are a great activity to help your kids develop their problem solving and analytical skills. These printable worksheets features Thanksgiving words to search and a picture to color.  The word list is also provided at the bottom of each worksheet so that you can check your answers.

Puzzles offered here range from easy>medium level of difficulty>hard>super hard.

Choose other fun and educational activities to keep your kids busy.  Coloring pages connect the dots, crafts, crossword puzzles, maze worksheets, pattern worksheets, story starters, sudoku puzzles, word decoders, and word scrambles are all here for your children to try while working on rehabilitation from a brain injury caused by their AE.

ABI Rehabilitation From AE

Caregiver Themed Word Search

In celebration of National Family Caregiver Month,  IAES has created this word search puzzle with descriptive words that define the role of our caregivers. Their dedication to us ensures we all have the very best outcomes and can lead our best lives. Express your appreciation and challenge yourself with this puzzle, as you work on rehabilitation from brain injury, and then present it to the caregiver in your life. 

Helpful Tips for Patients & Families


Cognitive Problems: A Caregiver’s Guide 


Caregiver Assistance ~Cognitive Problems and Brain Disorders 101

Taking care of someone who suffers from cognitive problems — and memory loss — requires different expectations and a special set of caregiving skills. So, whether it’s dementia or a brain injury after AE, what makes caring for a person with cognitive problems distinct? And as a caregiver, what do you need to know? Here are some answers.

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. MakeMeSmile is an extension for Chrome that makes sure you select International Autoimmune Encephalitis Society when you shop online. It’s free to download. And you  don’t even need to sign up.

Most Popular Visuals


The Damaged Brain 

COVID-19’s Impact on the AE Community

PET Coregisterd with MRI imaging of anti-NMDAR encephalitis patient with SARS-CoV-2 infection

Recently, COVID-19 has been described as a cause of autoimmune encephalitis including Anti-NMDAR encephalitis. In autoimmune encephalitis, SARS-CoV-2 virus causing COVID-19 disease leads to brain damage due to the cytokine storm mediated by interleukin mostly IL-2 and IL-6 in the CSF. This mechanism may be the cause of hypometabolism in PET related to cortical damage. Early hypermetabolism has been described in the mesial temporal areas and could be a marker of active inflammatory process of limbic encephalitis. On the contrary, the hypometabolism pattern including temporal, parietal and occipital areas was observed in the follow-up. In addition, MRI FLAIR signal abnormity has been described in autoimmune encephalitis caused by COVID-19 in the temporal lobe and in the basal ganglia. The regional infarct involving the right cerebellar cortex may be associated to cerebral thrombotic microangiopathy as a complication in our case.

Featured AE Article~

Psychosis or Something More? 

A young Arkansas woman, IAES member Libra Matney, faced months of unexplained sickness, diagnosis troubles and forgotten memories. She would eventually receive a diagnosis of anti-NMDAr autoimmune encephalitis.

Clinician’s Corner

Fatigue in Survivors of Autoimmune Encephalitis

Congratulations to IAES members who participated in the survey that resulted in this study.

If you look under the Methods subtitle you will see: “We developed a cross-sectional study using a network of several encephalitis patient support organizations (Encephalitis Society, Autoimmune Encephalitis Alliance, International Autoimmune Encephalitis Society, and Encephalitis 411)”

Fatigue can be an issue that remains after autoimmune encephalitis. Individuals recovering from autoimmune encephalitis need to be aware of fatigue and take it into account as they plan their day. Allowing for rest as well as continuing to work on rehabilitation can help them be successful.

COVID-19 Clinician’s Corner

Neurology on the Leading Edge: Post Pandemic Neurology: Solutions for Lasting Change in Health Care 

Watch the webinar and hear the discussion between A. Gordon Smith, MD, FAAN, and Orly Avitzur, MD, MBA, FAAN, with Vivian S. Lee, MD, PhD, MBA, talk about future of health care in America and why our system is failing the “COVID stress test.” Listen to the conversation about reimbursement shifts to value-based reimbursement along with other changes that will result in enduring change in the health care landscape.

CSF Findings in Acute NMDAR and LGI1 Antibody–Associated Autoimmune Encephalitis

The differences found in this study with anti-NMDAr encephalitis (NMDAR-E) patients and LGI1 encephalitis (LGI1-E) patients are more detailed clues that will help with a faster and more accurate diagnoses.

NMDAR-E and LGI1-E are the 2 most common AE subtypes. Each is representative of 1 of 2 clusters of AE subtypes: NMDAR-E for those with prominent CSF inflammation and LGI1-E for those with little or no CSF inflammation. Each of the 2 AE subtype exhibits a distinct pattern of CSF changes.

Patient-specific joint associations such as age, disease duration, and disease severity also differentially affect the CSF findings in NMDAR-E and LGI1-E. In NMDAR-E, but not in LGI1-E, CSF leukocyte counts become lower with longer disease duration and older age. Higher CSF leukocytes in NMDAR-E very early after onset as compared with later time points have been reported previously. Blood-CSF barrier dysfunction became more prominent in older patients with NMDAR-E but was less prominent in older patients with LGI1-E.

Here, we show that even in patients with NMDAR-E, advanced age decreases the likelihood of inflammatory CSF findings. So, normal routine CSF findings should not preclude testing for antineuronal antibodies in the elderly when AE is suspected. Evidence was found that a more chronic inflammatory response in anti-NMDAR-E is present before symptoms begin to show.

AE Trivia Playing Cards

The perfect companion  for patients, caregivers & therapists

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. 

AE Warrior Store

New Arrivals ~ The #BelieveYouCan AE Awareness Month 2022 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.

Shop & Support IAES Through PayPal’s 


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. MakeMeSmile is an extension for Chrome that makes sure you select International Autoimmune Encephalitis Society when you shop online. It’s free to download. And you  don’t even need to sign up.

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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