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theherd - THE HERD July 2022 2nd edition

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

Supportive assistance guide for your AE Journey~

July 2022 2nd Edition

In this Issue~

 

  • *Announcements:  Caregiver Monthly Zoom Support Group, #AETuesdayTries, LGI1 Research Survey, The ExTINGUISH Trial
  • *Children’s Corner (for all ages): Meditation Apps for Kids, Autoimmune Encephalitis and Other Neurological Syndromes With Rare Neuronal Surface Antibodies in Children: A Systematic Literature Review
  • *ABI Rehabilitation: Card Recall, AE Caregiver Word Search 
  • *Helpful Tips for the AE Warrior:  Autoimmune Encephalitis and Related Disorders of the Nervous System, Book Recommendations: Unwillable, In a Blurr
  • *Most Popular Visuals: AE Treatment Outcomes, Autoimmune Encephalitis Facts
  • *Featured AE Article: Memory Strategies, Helping You Remember 
  • *Podcast: Autoimmune Encephalitis: Clinical Spectrum and Management
  • *Clinician’s Corner: Neuropsychological Evaluations in Limbic Encephalitis
  • *Open Access: Autoantibody Encephalitis: Presentation, Diagnosis and Management
  •   *AE Trivia Cards:  The Single Most Important Educational/Rehabilitation Tool for AE 
  • *AE Warrior Store:  Shop for Your AE Bling and Raise Awareness 
  • *Shop & Support IAES: Sign up for PayPal’s #GiveAtCheckOut and Amazon Smiles

Announcements ~

Caregiver Monthly Zoom Support Group

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The next monthly meeting will take place August 11th 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 July 26th, 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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Meditation Apps for Kids

Kids of all ages can reap the benefits of meditation and mindfulness using technology. Meditating even only a few minutes a day has proven to reduce stress, boost immunity, aid memory and concentration, decrease depression and anxiety, and even make you more compassionate. And while there are apps that are more targeted to mental health needs, meditation can be a great entry point. Don’t know where to start? Check out some of these favorite meditation apps for kids. These tools guide kids through the process and help them relax and ground themselves.

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

Study conducted a systematic literature review on rare neuronal surface antibodies (NSAbs) in children (D2R, GABAAR, GlyR, GABABR, AMPAR, amphiphysin, mGluR5, mGluR1, DPPX, IgLON5, and neurexin-3alpha).

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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Card Recall

A great exercise to play with AE Trivia Cards! Select four playing cards in sequence (3 of clubs, 4 of clubs, 5 of clubs) and place in random order face up. After five seconds turn the cards face down.

Then turn the cards over in sequence (3, then 4, then 5).

As you improve increase the number of cards in the sequence, allowing one more second of view time for each card added, to a maximum of 7 cards.

Zebra Coloring Challenge

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Zebra is the symbol of rare disease and our logo, the burning zebra, is the symbol for Autoimmune Encephalitis. Celebrate the ‘rarity of you’ by challenging yourself with this coloring exercise. Art therapy addresses cognitive skills, attention skills and has been shown to decrease stress and improve mindfulness. 

Helpful Tips for Patients & Families

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Book Recommendations: 

Autoimmune Encephalitis and Related Disorders of the Nervous System

Autoimmune encephalitis, diseases where the immune system attacks the brain, have become a fast-moving field of study in recent years. The authors, Drs Josep Dalmau (who collaborated with IAES on AE Trivia Playing Cards), and Francesc Graus, have played pivotal roles in the discovery of these diseases. Here, they provide a comprehensive clinical guide to the differential diagnosis of these disorders, illustrated with over 200 figures, 30 videos and numerous clinical vignettes, many from their own practice. Clinical descriptions are straightforward, emphasizing distinctive diagnostic clues for each disease. The strengths and weaknesses of diagnostic tests and clinical criteria are discussed extensively, as well as the best evidence supporting the use of available treatments. There is an up-to-date description of immunological triggers and comorbidities, and well-illustrated and clearly summarized pathogenic mechanisms and disease models.

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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Unwillable

IAES member, and now author, Jackie M Stebbins, released her first book regarding her AE journey to great acclaim on June 1st. We are proud to support Jackie, to further AE awareness and to celebrate a very happy ending! Jackie’s book can be purchased on Amazon.

Most Popular Visuals

 Gelastic & Dacrystic Seizures

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Recovery

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Featured AE Article

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Memory Strategies, Helping You Remember

Memory is the ability to learn, store and retrieve information. New and increasing problems with any or all of these 3 stages of memory often occur after an acquired brain injury (ABI) from diseases like autoimmune encephalitis or other kind of injury from illness that affects your nervous system.

Many autoimmune encephalitis patients struggle with remaining memory issues. This article contains strategies that can aid in keeping things straight and improving memory. Consistency is important to making them work.

This is why IAES created  AE Trivia Playing Cards In order to learn new information successfully, it has to be re-packaged for short-term and long-term memory-impaired people so that it is in a simple, concrete form, in small chunks, and repeated frequently. This is also why IAES has developed AE memes. Another tool to support the AE patient’s deficits while utilizing their strengths. 

Podcast

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Autoimmune Encephalitis: Clinical Spectrum and Management

Associate Editor of Practical Neurology, Dr. Tom Hughes, Department of Neurology, Cardiff University, interviews Prof. Sarosh R Irani, Oxford Autoimmune Neurology Group, Nuffield Department of Clinical Neurosciences, Oxford University, about his recent paper, in which he summarized the well-known autoantibody-mediated encephalitis syndromes with neuronal cell-surface antigens and focus on practical aspects of their diagnosis and treatment, offer their clinical experiences of managing such cases and highlight more basic neuroimmunological advances that will inform their future diagnosis and treatments.

Clinician’s Corner

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Neuropsychological Evaluations in Limbic Encephalitis

Limbic encephalitis (LE) can negatively affect cognition, mood and behavior. On the cognitive level, LE is primarily associated with different variants of mostly subacute episodic long-term memory dysfunction but also with impairments in attention and executive functions. On the behavioral level, patients with LE often show altered affective states, but other and partially severe psychiatric symptoms have been described as well. Cognition affect and behavior can recover after immunomodulatory treatment as long as no persistent structural damage has been induced.

 

An evidence-based neuropsychological baseline assessment for supporting the diagnosis of LE should ideally be conducted before treatment initiation. Repeated assessments for demonstrating disease- or treatment-related disease dynamics should become an essential part of the diagnostic workup of patients with evident or suspected limbic encephalitis. Therefore, neuropsychology contributes to the diagnosis of LE, it is an important outcome parameter for monitoring the course of the disease and the success of therapeutic interventions, and therewith may guide treatment decisions.

Open Access

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Autoantibody Encephalitis: Presentation, Diagnosis and Management

Newly published research by Dr. Eric Lancaster at UPENN.
There is a write up on all the extracellular antibodies that is most helpful.
Autoantibody encephalitis involves distinct clinical syndromes that can be recognized in many cases. In other patients, cancer screening and rational antibody testing can lead to a precise diagnosis. Our knowledge about the optimal treatments is still hampered by the lack of randomized treatment trials, but new information from retrospective studies has provided important new information on treatment of anti-LGI1 and anti-NMDAR syndromes. In selecting treatments it is important to understand the underlying disease mechanisms and the evidence supporting treatment. There will almost certainly be additional autoantibody syndromes discovered in the coming year. Each disease teaches us about the neuroscience of the target antigens. It is not reasonable to expect a general neurologist to memorize the associations of each new antibody. Rather, the goal should be to read and review the cancer associations and treatment guidance for a specific antibody when encountering a case.

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 for Your AE Bling and Raise Awareness

AE Warrior Store products proclaim the bravery and fighting spirit it takes to fight AE and regain your health. Shirts, hoodies, hats, puzzles, mugs and gift items make this your one stop shop for patients, caregivers and friends who have a vested interest in raising awareness for Autoimmune Encephalitis.  Designs can be transferred to any product you prefer. The proceeds of your purchase will immediately support Autoimmune Encephalitis patients, caregivers, and families who are walking this difficult journey.

IAES holds the trademark for #AEWarrior, AE Warrior and Autoimmune Encephalitis Warrior and is the creator of these phrases. Proceeds also go to support research that may one day lead to a cure.

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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Tabitha Orth
On June 16th- 2022, International Autoimmune Encephalitis Society and Tabitha Orth, IAES President and Founder, officially became the 7,315th “point of light”. The award was founded by President George H.W. Bush in 1990.
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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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