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THE HERD November 2019~ 1st edition

theherd - THE HERD November 2019~ 1st edition

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Selected Highlighted News in the field of Autoimmune

Encephalitis November 2019 1st edition

In this Issue~

  • Announcements: #GivingTuesday Dec 3rd. Save the date, IAES and PennNeuroKnow enter Partnership
  • Most Popular Article of the Month: Understanding auto-immune encephalits in the ICU
  • Most Popular Visual of the Month:  Main types of autoimmune encephalitis. Signs, test, treatment.
  • STUDY Needs Your Participation: Understanding Consequences of Encephalitis
  • Most Shared Post:  AE is a group of Disorders
  • Most Popular Poem: Ernest Hemingway
  • Clinician’s Corner:  Autoimmune Psychosis: an international consensus on an approach to the diagnosis and management and psychosis of suspected autoimmune origin
  • Open Access:   The autoantibody-mediated encephalitides: from clinical observations to molecular pathogenesis

December 3rd is #GivingTuesday a global day of giving that has become a world-wide movement. Mark your calendars to give to IAES on #GivingTuesday!

It is because of YOU that #IAES has raised awareness for Autoimmune Encephalitis so that early diagnosis is occurring with greater frequency. Help us continue our work. 

This Giving Tuesday, Facebook and PayPal are matching up to $7 million in donations to eligible U.S. nonprofits like IAES.  If you donate to IAES through Facebook’s charitable givingtools on Dec 3rd, your donation will be matched up to $250,000 per nonprofit. Encourage family and friends to do the same because donations will be matched up to $20,000 per donor, until the $7 million runs out. You can raise funds on Facebook by creating a fundraiser or by writing a post with the hashtag #GivingTuesday and a donate button. (Update: Facebook said that its $7 million match was met quickly on Tuesday morning. Plan ahead as matching donations begins at 5 am PST until 8 am EST!




IAES and PennNeuroKnow (PNK) are excited to announce their partnership to help AE patients and their families understand the science behind their disease. PNK is a weekly blog run by PhD students at the University of Pennsylvania that aims to break down neuroscience topics for everyone to understand. In coming together, PNK will receive input from IAES about issues relevant to the AE community and create materials to address topics that non-scientists might have trouble understanding, ranging from general subjects like the immune system to specific practices like FDG-PET scans. Look for an upcoming blog article introducing the PNK team, and future handouts and blogs about various topics related to AE!

Most Popular Article of the Month~

Understanding auto-immune encephalitis in the ICU

The outcome of AE is generally good, even after several weeks in ICU, stressing the continued need for aggressive supportive care. Recent studies point to a strong impact of autonomic dysfunction and systemic complications on outcome. In anti-NMDAR encephalitis, central hypoventilation, movement disorder, abnormal MRI, CSF inflammation, delayed immunotherapy and lack of early improvement are associated with poorer functional status, whereas the impact of seizures/status epilepticus deserves further investigation.


Most Popular Visual of the Month~

Main types of autoimmune encephalitis in the ICU


The survey will take approximately 15 minutes to complete.
This study is being led by Dr. Venkatesan at Johns Hopkins University in collaboration with Dr. Yeshokumar at the Icahn School of Medicine at Mount Sinai.
We would like to invite all IAES encephalitis patients to participate in a study which surveys for symptoms following encephalitis/AE.
While Autoimmune encephalitis may result in the development of a number of persistent symptoms, these have not been well studied. A better understanding of the persistent symptoms in people affected by Autoimmune encephalitis may lead to the development of targeted therapeutic and rehabilitation measures to enhance function and quality of life.
This study will include patients between 18 – 84 years of age who are diagnosed with any form of encephalitis.

Most Liked and Shared IAES Post

AE is a group of Disorders

AE is a group of disorders. Each type of AE is signified by the antibody that has been identified. But, about 45-50 % of us do not have an identified antibody. That is because the disease was first identified in 2007 when Dr. Dalmau found the NMDAr antibody and BINGO! He put AE on the map. Since then researchers have identified about 2-3 antibodies a year.
The treatment protocol is the same. Some types of AE have different symptoms and syndromes. You will see at the top of this image the antibodies that affect the Limbic system. That’s most of us! Memory is our biggest issue and is often the last to come back/improve. Looking at what the limbic system controls, you can see just why you have the symptoms you do!
To find out more



Most Popular Poem

Write hard and clear about what hurts you
But my dear
There is so much
Where to start I haven’t a clue
It’s where I was
It’s what I lost
It’s how much trying to get it back has cost
It’s not being the same
It’s being so different 
If I could change I would but
Simply I couldn’t
So let me write hard 
And let me be clear

That all of it hurts me my dear

~Ernest Hemingway

Clinician’s Corner

Autoimmune psychosis: an international consensus on an approach to the diagnosis and management of psychosis of suspected autoimmune origin

Dr. Tom Pollak is one of the experts on our medical Advisory Board. He shares:

JUST PUBLISHED! Very proud to present our international consensus on an approach to diagnosis and management of autoimmune psychosis. Nearly 2 years in the making. We hope this will help psychiatrists in recognizing this important organic cause of psychosis. We briefly review the background, discuss the existing evidence for a form of autoimmune psychosis, and propose a novel, conservative approach to the recognition of possible, probable, and definite autoimmune psychoses for use in psychiatric practice. We also outline the investigations required and the appropriate therapeutic approaches, both psychiatric and immunological, for probable and definite cases of autoimmune psychoses, and discuss the ethical issues posed by this challenging diagnostic category.


The autoantibody‑mediated encephalitides: from clinical observations to molecular pathogenesis

This paper was just released Oct 27th. It is an excellent review we highly recommend. The useful and clear section on mechanism of action and how autoimmunity gets started in these disorders is particularly helpful. 

This algorithm  covers the evaluation process for autoimmune encephalitis and treatment protocol.



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.

Your donations are greatly appreciated. Every dollar raised allows us to raise awareness and personally help Patients, Families and Caregivers through their Journey with AE so that best outcomes may 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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