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theherd - THE HERD June 2022 1st edition

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

Supportive assistance guide for your AE Journey~

June 2022 1st Edition

In this Issue~

 

  • *Announcements:  Caregiver Monthly Zoom Support Group, #AETuesdayTries, LGI1 Research Survey, The ExTINGUISH Trial
  • *Children’s Corner (for all ages): Our Fox Has Lost His Socks, Autoimmune Encephalitis and Other Neurological Syndromes With Rare Neuronal Surface Antibodies in Children: A Systematic Literature Review
  • *ABI Rehabilitation: 3D Brain Quiz, AE Mad Libs 
  • *Helpful Tips for the AE Warrior:  Book Recommendation: In a Blurr, Wear a Medical I.D. Bracelet 
  • *Most Popular Visuals: Red Flags for Suspicion of AE in Patients with Psychosis, Plasmapharesis
  • *Featured AE Article: Risk Classification to Differentiate Autoimmune from Viral Encephalitis
  • *Podcast: Susannah Cahalan on Anti-NMDAr Encephalitis and Her Journey to Diagnosis 
  • *Clinician’s Corner: Clinical  Sensitivity, Specificity, and Predictive Value of Neural Antibody Testing for Autoimmune Encephalitis
  • *Open Access: Paraneoplastic encephalitis: clinically based approach to diagnosis and management
  •   *AE Trivia Cards:  The single most important educational/rehabilitation tool for AE 
  • *AE Warrior Store:  Shop our AE Warrior Dad collection for Father’s Day
  • *Shop & Support IAES: Sign up for PayPal’s #GiveAtCheckOut and Amazon Smiles

Announcements ~

Caregiver Monthly Zoom Support Group

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This is a new service for caregivers. The next monthly meeting will take place June 9 th at 6 pm PST/9 pm EST. The IAES Caregiver Support Group takes place the 2nd Thursday of each month. This is a ‘safe space’ where caregivers can build relationships/friendships with others who are “walking that walk”, share/vent and receive the support and direction they so richly deserve.

AE Caregivers have a variety of unique challenges that are different from the AE Warrior’s. Often they feel alone and need to be able to share their concerns with others who are on that same journey. Sometimes hearing a chorus of ‘Me Too!’ can have great healing power of its own. Additionally, some of you may qualify for services you are unaware of that could assist or solve a challenge you (or your loved one) are having. As topics are discussed, your hostess, Mari Davis, will direct you to available solutions, services and supports.

Your Hostess, IAES Support Services Coordinator Mari Wagner Davis, has 30 years of experience as an accredited Nurse Case Manager. Mari’s professional career prior to becoming ill with Autoimmune Encephalitis, was to locate and arrange for the support services needed for patients when released from the hospital to rehabilitation or home.

#AETuesdayTries

The next monthly #AETuesdayTries zoom meet-up will take place June 28th, and will always be the last Tuesday of each month.

“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.

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.

LGI1 Research Survey

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If you live in the United States, United Kingdom, Spain or Germany, please enroll!

 

A Pharma company wants to understand what the journey of an Anti-LGI1 Autoimmune Encephalitis patient is like and needs your help!

The research has two parts: an online survey and a one-hour telephone interview.  It addresses both patients and/or carers and you will be financially reimbursed for your time.

This is a GOLDEN opportunity for you to assist a Pharma company interested in developing new treatments for LGI1 patients directly. It is vital that they understand our AE journey and struggle! YOUR input will drive future progress for yourself and patients who will receive this diagnosis in the future. You can be a catalyst for change!

 The ExTINGUISH Trial

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This is the first-ever Clinical Trial for a promising new drug, Inebilizumab, to treat anti-NMDA receptor encephalitis, and will be funded by the National Institutes of Health (NIH). 

The trial will start recruitment in January 2022.  International Autoimmune Encephalitis Society is honored to be supporting the ExTINGUISH trial along with Autoimmune Encephalitis Alliance and The anti-NMDA Receptor Encephalitis Foundation. 

 Main Inclusion Criteria (in part)

Enrollment  is limited to 116 newly diagnosed patients with a confirmed diagnosis of anti-NMDAR Encephalitis who are 18 years or older. Patients must have received at least 3 days of methylprednisolone 1000 mg IV or equivalent corticosteroid within 30 days prior to randomization (Day 1). In addition, patients must have received EITHER of the following treatments within 30 days before randomization.

  • IVIg, at a minimum dose of 2 g/kg
  • Plasma exchange or plasmapheresis, with a minimum of 5 treatments. NOTE: These treatments may be provided during the screening period, but must be completed prior to randomization.

 mRS of ≥3 at the screening visit, indicating at least moderate disability.  Ability and willingness to attend study visits and complete the study.

Children’s Corner

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Our Fox Has Lost His Socks

Author Desiree Wolter has written a gentle children’s story based on true events of when her husband became ill with autoimmune encephalitis. Desiree is an IAES member from Australia. A percentage of proceeds from the sale of this book will go to supporting IAES’ mission.

Our Fox Has Lost His Socks is destined to be the most prized addition to anyone’s library who has a family member with a serious illness, and a brilliant gift for all ages. AE is not mentioned specifically, but you will recognize it by the “Brain on fire” discription. 

‘This is our fox with his white tidy socks that he wears every day the exact same way! Up to the shin and just under the knee, white and crisp and as clean as can be until one day you see, he started to act hmmm …. Differently!’

Let Mamma Fox, Fox Red and Fox Blue take you on a funny yet sad journey of when, as Dr Otter explains it “Pappa Fox’s brain is on fire” Pappa Fox acts out of character paints everything pink, acts very silly and confused and loses his tidy white socks. Will life ever be the same for this fox family? Will Pappa Fox ever find his Socks again?

Autoimmune Encephalitis and Other Neurological Syndromes With Rare Neuronal Surface Antibodies in Children: A Systematic Literature Review

This study conducted a systematic literature review on rare neuronal surface antibody syndromes (NSAS) in children (D2R, GABAAR, GlyR, GABABR, AMPAR, amphiphysin, mGluR5, mGluR1, DPPX, IgLON5, and neurexin-3alpha).

To the author’s knowledge this is the first systematic review focusing on rare pediatric NSAS and may therefore contribute to their characterization. This review discloses antibody-specific features in children, helping clinicians suspect NSAS. We suggest examining both serum and CSF with CBA for a broad NSAbs panel in children presenting with new-onset focal or diffuse neurological deficits, cognitive difficulties, psychiatric symptoms, seizures, and/or movement disorder of unknown origin, even in the absence of definite MRI, EEG, or CSF abnormalities.

ABI Rehabilitation From AE

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3D Brain Quiz

3D Brain Quiz

The most complex organ in the human body is comprised of many parts and systems. Take this 3D Brain quiz to see how many regions of the brain you’re familiar with.

AE Mad Libs

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Thanks to our Chief Resilience Officer, Tessa McKenzie, we have this fun AE MAD LIBS story for you to challenge yourself with. Have some fun while doing this cognitive rehabilitation exercise that brings about thoughtful reflection around how strong you can be on your AE journey.
You will find this and other specifically designed exercises for AE Warriors on the Cognitive Exercises page under the ‘For Patients’ tab on the IAES website.

Helpful Tips for Patients & Families

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Book Recommendation: In a Blurr 

IAES member Kertisha Brabson has written this book detailing her experience with Autoimmune Encephalitis. 

Out of nowhere, a beautiful and healthy mother of two falls very sick from a mysterious illness. One that leaves healthcare professionals from several different hospitals scratching their heads, and with her family and community in shock. This mysterious and deadly illness progressed rapidly, causing 29 year old Kertisha to slip into a coma for seven months; leaving her children behind to witness the tragedy of their mother. Kertisha’s family was told to prepare for the worst, but Kertisha wasn’t ready to leave the world and her family wasn’t ready to let her go.

“In A Blurr,” takes you on a journey of Kertisha’s life as she battles this ugly illness and shows how she and her family were able to experience sunshine after seven months of cloudy days.

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Wear A Medical I.D. Bracelet

Reminder to all members~ we all need to wear a medical I.D. Bracelet.

This will prevent anyone from misunderstanding symptoms as psychiatric or behavioral problems. See the “Apps and Tools for AE Warriors” page on our website for examples AE Warriors recommend and other supportive tools.

Most Popular Visuals

Red Flags for Suspicion of AE in Patients with Psychosis 

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Plasmapharesis

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Featured AE Article

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Risk Classification to Differentiate Autoimmune from Viral Encephalitis

As compared to viral encephalitis, patients with autoimmune encephalitis were more likely to be younger (< 60 years old), have a subacute (6-30 days) or chronic ( >30 days) presentation, have seizures, and have psychiatric and/or memory complaints (P< 0.001). Furthermore, patients with autoimmune encephalitis were less likely to be febrile (have symptoms of fever), and to lack inflammatory cerebrospinal fluid (CSF) (defined as white blood cells < 50 per microliter or protein < 50 milligrams per deciliter) [See Table 1]. In the multivariable logistic regression model, subacute/chronic presentation, psychiatric and/or memory complaints, and lack of inflammatory CSF were significantly associated with autoimmune encephalitis. Using these 3 variables, patients were classified into 3 risk categories for autoimmune encephalitis: low risk (0-1 variables); 0%; intermediate risk (2 variables); 16%; and high risk (3 variables); 83% (P value < 0.001).

Podcast

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Susannah Cahalan on Anti-NMDAr Encephalitis and Her Journey to Diagnosis

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In this episode, Dr. Nath is joined by journalist and New York Times bestselling author, Susannah Cahalan. Susannah recounts her journey as one of the earliest individuals to be diagnosed with anti-NMDA encephalitis and speaks about writing her memoir Brain on Fire. Dr. Nath is then joined by Dr. Josep Dalmau, professor at the Catalan Institute for Research and Advanced Studies at the University of Barcelona and adjunct professor of neurology at the University of Pennsylvania. Dr. Dalmau shares how he and his colleagues discovered anti-NMDA encephalitis and the future of treatment options for patients.

Clinician’s Corner

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Clinical Sensitivity, Specificity, and Predictive Value of Neural Antibody Testing for Autoimmune Encephalitis

Neural antibody testing plays a major role in the diagnostic evaluation of patients with suspected autoimmune encephalitis. Through reviewing the diagnostic measures of clinical sensitivity, specificity, and predictive value, it becomes apparent that a neural antibody test result cannot be considered in isolation. An understanding of how the disease state is defined in relation to the neural antibody, knowledge of the test methodology implemented, and estimation of the pretest probability that the patient’s presentation is autoimmune are all required in each case to ensure appropriate test interpretation.

Open Access

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Paraneoplastic encephalitis: clinically based approach on diagnosis and management

Paraneoplastic neurological syndromes (PNSs) comprise a subset of immune-mediated nervous system diseases triggered by an underlying malignancy. Each syndrome usually shows a distinct clinical presentation and outcome according to the associated neural antibodies. PNSs generally have a subacute onset with rapid progression and severe neurological disability. However, some patients may have hyperacute onset or even show chronic progression mimicking neurodegenerative diseases. Updated diagnostic criteria for PNS have been recently established in order to increase diagnostic specificity and to encourage standardisation of research initiatives related to PNS. Treatment for PNS includes oncological therapy and immunomodulation to halt neurological deterioration although current treatment options are seldom effective in reversing disability. Nevertheless, growing knowledge and better understanding of PNS pathogenesis promise better recognition, earlier diagnosis and novel treatment strategies.

Main messages ⇒ The updated criteria for paraneoplastic neurological syndromes help to standardize the clinical approach towards diagnosis. ⇒ Specific knowledge of the caveats of commercial antibody testing methods is required to avoid under/overdiagnosis of these syndromes. ⇒ Early tumor detection, removal and concomitant immunomodulation are necessary to ensure better outcomes.

CONCLUSIONS AND FUTURE PERSPECTIVES

PE comprises a small subset of autoimmune disorders associated with a growing number of neuronal Abs and a heterogeneous pathophysiology. Despite major advances in the knowledge of PNS pathogenesis and the recent update of their diagnostic criteria, a deeper understanding is still required to promote their diagnosis and optimal management. The development of novel targeted therapies is crucial to improve PNS outcomes while preserving the beneficial anti-tumor immunity.

AE Trivia Playing Cards

The perfect companion  for patients, caregivers & therapists

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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

Shop our AE Warrior Dad Collection for Father’s Day

 

Whether your Dad is an autoimmune encephalitis patient or parent of a child fighting AE, these AE Warrior Dad products proclaim how proud you are of his bravery and fighting spirit. Great gifts for father’s day, birthdays or anytime your Dad needs his spirits lifted. Designs can be transferred to any product you prefer. 

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 

#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.

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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.

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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.

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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.

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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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Our website is not a substitute for independent professional medical advice. Nothing contained on our website is intended to be used as medical advice. No content is intended to be used to diagnose, treat, cure or prevent any disease, nor should it be used for therapeutic purposes or as a substitute for your own health professional's advice. Although THE INTERNATIONAL AUTOIMMUNE ENCEPHALITIS SOCIETY  provides a great deal of information about AUTOIMMUNE ENCEPHALITIS, all content is provided for informational purposes only. The International Autoimmune Encephalitis Society  cannot provide medical advice.


International Autoimmune Encephalitis Society is a charitable non-profit 501(c)(3) organization founded in 2016 by Tabitha Andrews Orth, Gene Desotell and Anji Hogan-Fesler. Tax ID# 81-3752344. Donations raised directly supports research, patients, families and caregivers impacted by autoimmune encephalitis and to educating healthcare communities around the world. Financial statement will be made available upon request.

CONTACT US


352-527-2470

IAES@AUTOIMMUNE-ENCEPHALITIS.ORG

Autoimmune Encephalitis Trivia Playing Cards

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