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THE HERD June 2021 1st edition

theherd - THE HERD June 2021 1st edition

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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, IAES Member, Jessie Cheek, Publishes Book About her Daughter’s Journey, AE Warrior Dad Collection for Father’s Day Gift Giving
  • *Children’s Corner (for all ages): COVID-19 and Gen Z: When can I get my Life Back?, 5 ways to talk to children about brain injury
  • *ABI Rehabilitation: Lumosity Brain Training-Evidence-Based Brain Training, Positive Thinking Word Search
  • Useful Tips for the AE Warrior:  Accessing Medication Directly From the Drug Manufacturer
  • Most Popular Visual Downloads: The Cat in the Hat on Autoimmune Encephalitis
  • *COVID-19’s Impact on the AE Community:  SARS-CoV-2–Specific Antibodies in Breast Milk After COVID-19 Vaccination of Breastfeeding Women, Can Immunocompromised People Safely Receive the COVID-19 Vaccine?
    *Featured AE Article: GAD antibody-spectrum disorders: progress in clinical phenotypes, immunopathogenesis and therapeutic interventions 
  • *Clinician’s Corner: Anti N‐Methyl‐D‐Aspartate (NMDA) receptor encephalitis: from psychosis to cognitive impairment
  • *COVID-19 Clinician’s Corner: Therapeutic Anticoagulation in Non-Critically Ill Patients with Covid-19
  • *Open Access: Seizures and risk of epilepsy in anti‐NMDAR, anti‐LGI1, and anti‐GABABR encephalitis
  • *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


IAES Member, Jessie Cheek, Publishes Book About her Daughter’s Journey

Schizophrenia or a Mysterious Illness: Julia’s Journey

When the most unpredictable happens…..

Parenting is challenging under the best of circumstances. If your child suddenly begins exhibiting strange behaviors and appears to be contracting an unknown psychiatric or neurological illness, parenting becomes even more confusing. If the medical professionals can’t seem to figure out what kind of disease your child has, where does a parent go for help?

Discovering the answers to Julia’s mysterious illness was a long and complicated journey. A misdiagnosis of Schizophrenia delayed proper treatment. Once a correct diagnosis was given, finding and receiving the appropriate treatment for her condition was another major challenge. This story is a journey of perseverance amidst many obstacles.

AE Warrior Store

New Arrivals ~ The AE Warrior Dad Collection

New arrivals ~ The AE Warrior Store has a new collection in time for your Father’s Day shopping.  Get some special swag for Dad on June 20th. Caregivers, Advocates and AE warriors will appreciate receiving a personalized gift that brings a smile, reminds them of how proud you are of their fighting spirit and raises awareness for Autoimmune Encephalitis. 

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

COVID-19 and Gen Z: When can I get my Life Back?

Join Penn Medicine for a discussion with our nation’s leading expert on the COVID-19 pandemic, Anthony S. Fauci, MD

Director, National Institute of Allergy and Infectious Diseases

 Friday, June 18, 2021 

11:00 AM to Noon

Q&A with Penn Health Experts:  Moderated by 

Janice Hillman, MD
Founder, Penn Adolescent and Young Adult Medicine 


Patrick J. Brennan, MD
Chief Medical Officer and Senior Vice President,
University of Pennsylvania Health System

 E. Cabrina Campbell, MD
Professor of Psychiatry, Perelman School of Medicine


Kenneth R. Ginsburg, MD, MSEd
Professor of Pediatrics, Children’s Hospital of Philadelphia

J. Larry Jameson, MD, PhD
Executive Vice President, University of Pennsylvania for the Health System
Dean, Perelman School of Medicine


Kevin B. Mahoney
Chief Executive Officer, University of Pennsylvania Health System

Q&A with Penn Health Experts to follow.

5 ways to talk to children about brain injury

After a relative or friend has a brain injury, life can be especially hard for children. They have a hard time understanding what has happened, how to cope, and how to help. Parents often say that they have trouble explaining injuries to their children. Here are some ideas of ways you can explain brain injury to your child after one of their family members or friends is injured.

ABI Rehabilitation From AE

Lumosity Brain Training-Evidence-Based Brain Training

Are you working on your cognitive rehabilitation from AE?

Dive into 60+ brain training games designed to challenge a variety of cognitive skills. This app has brain exercises targeting memory, attention, speed, flexibility, and problem-solving. Users can design their own personalized training, including ‘courses’ with brain-injury specific content. More advanced features are available through a paid subscription.

Positive Thinking Themed Word Search

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

Accessing Medication Directly From the Drug Manufacturer

Genentech Patient Foundation:  (866-681-3329) helps people who do not have health insurance, or people who have health insurance but can’t afford their Genentech medicine. The Genentech Access to Care Foundation can help qualifying patients get their medicine for free. Medicines used in the treatment for Autoimmune Encephalitis that Genentech manufactures are:

Cellcept (mycophenolate mofetil)Rituxan (rituximab)Actemra (tocilizumab)

They can work with you if: 

  •        You have no health care plan
  •        Your health care plan turned down paying for your medicine
  •        You have a high co-pay or co-insurance 

Patient assistance support is for eligible patients in the United States who don’t have insurance coverage or who can’t afford out-of-pocket co-pay costs.

Most Popular Download

The Cat in The Hat on Autoimmune Encephalitis


COVID-19’s Impact on the AE Community

SARS-CoV-2–Specific Antibodies in Breast Milk After COVID-19 Vaccination of Breastfeeding Women



Eighty-four women completed the study, providing 504 breast milk samples. No mother or infant experienced any serious adverse event during the study period. Forty-seven women (55.9%) reported a vaccine-related adverse event after the first vaccine dose and 52 (61.9%) after the second vaccine dose, with local pain being the most common complaint (Table). Four infants developed fever during the study period 7, 12, 15, and 20 days after maternal vaccination. All had symptoms of upper respiratory tract infection including cough and congestion, which resolved without treatment except for 1 infant who was admitted for neonatal fever evaluation due to his age and was treated with antibiotics pending culture results. No other adverse events were reported.

This study found robust secretion of SARS-CoV-2 specific IgA and IgG antibodies in breast milk for 6 weeks after vaccination. IgA secretion was evident as early as 2 weeks after vaccination followed by a spike in IgG after 4 weeks (a week after the second vaccine).


As more people get vaccinated, what will getting vaccinated mean for immunocompromised people, and how does immunocompromised status potentially impact COVID-19 vaccine immunity?

People who are immunocompromised have weakened immune systems. According to the Centers for Disease Control and Prevention (CDC), this includes people who have diseases that affect their immune system.

“These COVID vaccines are not live vaccines,” Gulik says. “And so, a patient that is immunocompromised—no matter what degree of compromise—could take the vaccine.”

 Key Takeaways

  • Doctors recommend immunocompromised people receive the COVID-19 vaccine.
  • The Pfizer and Moderna COVID-19 vaccines do not contain live traces of COVID-19.
  • Depending on the person’s immunocompromised level, some may receive lower levels of immunity from the vaccine.

Featured AE Article~

GAD antibody-spectrum disorders: progress in clinical phenotypes, immunopathogenesis and therapeutic interventions

The review highlights that high-titer anti-GAD antibodies are associated with an array of distinct neurological syndromes including SPS, cerebellar ataxia, epilepsy, limbic encephalitis, abnormal eye movements. Although high anti-GAD antibodies in serum or their presence in CSF are important for diagnosis, the titers do not correlate with disease severity and do not generally predict response to immunotherapy. Despite considerable efforts, using both in vitro and in vivo preparations, the pathophysiological role of anti-GAD antibodies has not yet been clarified, suggesting that other autoantibodies affecting inhibitory neurotransmission might be of importance, because autoimmunity targeting inhibitory synaptic antigens point to a unifying theme of hyperexcitability as the underlying pathomechanism.

Autoimmune Encephalitis Mimics Many Diseases

Autoimmune Encephalitis is a complex diagnosis to make. A diagnosis of sero-negative (antibody negative) AE is even more challenging. AE mimics many different diseases that have the same symptoms.

The doctor begins with taking the medical history and details of how and when the illness and symptoms appeared. This information alone guides the doctor as to what the cause could be and why AE is not considered as it does not fit the clinical picture.

Each test and lab guides the doctor as they eliminate possibilities and guide the doctor as to what test to run next. Each test result narrows in on what is not the cause and what the cause could be. Because there are so many diseases that mimic AE coupled with an under recognized disease, misdiagnosis can occur.

We recommend you watch the recent presentation Dr. Eoin Flanagan (Mayo Clinic) did for IAES to help you better understand AE.

By the end of this webinar, you should be able to
1. Recognize the clinical manifestations of Autoimmune Encephalitis.
2. Understand the utility and pitfalls of neural autoantibody testing.
3. Appreciate the novel settings in which Autoimmune Encephalitis is arising.


Clinician’s Corner

Anti N‐Methyl‐D‐Aspartate (NMDA) receptor encephalitis: from psychosis to cognitive impairment

N‐Methyl‐D‐Aspartate Receptor (NMDAR) is glutamate‐gated ion channel that is associated with normal brain function. N‐Methyl‐D‐Aspartate Receptor play an important role in cognition and behavior. NMDAR blocking agents may cause manifestations such as psychosis.  In recent years, the role of anti‐NMDAR antibodies in the development of psychiatric symptoms has been emphasized. Anti‐NMDAR autoimmune encephalitis is a relatively new neuropsychiatric disease that has been described in the last two decades. Characteristics such as psychosis, seizures, abnormal movements, coma, and dysautonomia are manifestations of this disorder. So that up to two thirds of these patients are first referred to psychiatric centers. Cognitive deficits such as working memory deficits have also been suggested as long‐lasting consequences of the disease. In this study, while presenting a clinical case with early psychiatric manifestations, we point out the need to pay attention to rare neurological diagnoses in the presence of patients with common psychiatric manifestations.

COVID-19 Clinician’s Corner


Therapeutic Anticoagulation in Non-Critically Ill Patients with Covid-19

Hot off the press, well actually, it hasn’t even hit the press. This exclusive pre-print publication is having an impact beyond what is normally seen in advance of peer review.

The paper “Therapeutic Anticoagulation in Non-Critically Ill Patients with Covid-19” is currently only available as a pre-print (released May 17, 2021) and yet it appears to be making an impact the world over.

The question we’re asking, is it warranted? Do you agree with the results and the changes? Read the game-changing pre-print publication.

Seizures and risk of epilepsy in anti‐NMDAR, anti‐LGI1, and anti‐GABABR encephalitis


Conclusion: Our study suggested that immunotherapy delay and IEDs were associated with the development of epilepsy in patients with anti-NMDAR, anti-LGI1, and anti-GABAB R encephalitis. Early diagnosis and treatment were required, and particular consideration should be given to patients with these risk factors.

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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