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theherd - THE HERD May 2022 2nd edition

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

Supportive assistance guide for your AE Journey~

May 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): Embroidery: A Cognitive Exercise Game, Autoimmune epilepsy due to N-methyl-d-aspartate receptor antibodies in a child: a case report
  • *ABI Rehabilitation: Just Keep Swimming Journal Cover, Entangled Figures: A Visual Spatial Cognitive Exercise, Resilience Word Scramble
  • *Helpful Tips for the AE Warrior:  Book Recommendation: In a Blurr 
  • *Most Popular Visuals: Brain Injury is Misunderstood by Many People, IAES is Here for You. You Are Not Alone.
  • *Featured AE Article: Rockford family searching for answers as daughter lives with rare autoimmune disease
  • *Video: Autoimmune Encephalitis~IAES Members in the News
  • *Clinician’s Corner: Antibody Therapies in Autoimmune Encephalitis
  • *Open Access: Seronegative Autoimmune Encephalitis: A Challenge for the Neurologist
  •   *AE Trivia Cards:  The single most important educational/rehabilitation tool for AE 
  • *AE Warrior Store:  Puzzle collection
  • *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 16th 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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Embroidery: A Cognitive Exercise Game

[Focus on language] Do you know the language game “Embroidery”?

In this game, a table with sixteen boxes appears and each box contains a letter of the alphabet. You must find the word hidden within the scramble of letters. You can choose seven, eight or nine-letter words. This is a deceptively challenging game, so clues are provided to help you find the correct answer.

The skills called upon in this exercise are constantly used in our daily lives. For example, scanning for your name on a class list or scanning a monitor for airline flight departures to see if your flight is on time. Crossword puzzles also train your skills for word retrieval. It is about mentally searching through the language repository stored in long-term memory. Try this game for free right now!

Autoimmune epilepsy due to N-methyl-d-aspartate receptor antibodies in a child: a case report

Seizures of autoimmune etiology may occur independent of or predate syndromes of encephalitis. We report a child with “pure” autoimmune epilepsy followed up for 7 years to highlight long-term effects of this epilepsy and the importance of early initiation and appropriate escalation of immunosuppression to achieve a good long-term outcome. 

Our case report highlights the importance of early diagnosis of AE, early treatment with immunotherapy, long-term clinical follow-up, and timely escalation and continuation of immunotherapy in achieving a good patient outcome, retaining intellectual development, and quality of life.

ABI Rehabilitation From AE

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Just Keep Swimming Journal Cover

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This journal cover is created to fix a composition notebook measuring 7.5 inches by 9.75 inches. Make sure your printer is set for custom printing to achieve the correct size. Download on label paper or cut out and affix with a glue stick. Then color your cover for a unique and personalized journal any AE Warrior would be proud of. Caregivers can use their journal to track symptoms and note questions they would like to cover during the next doctor’s visit. 

Entangled Figures: A Visual Spatial Cognitive  Exercise

How To Play

In this game, you see three entangled objects, like flowers, fruit, animals, geometrical figures, or amoebas, which taken together make up a more complex object. These three entangled graphical objects are compared to a multiple choice of similar or different objects that are possible components of the complex entangled figure. You must choose the one that is part of the entangled figure.To choose the correct object, you must mentally disentangle the complex figure into its component parts. This task is easier with identifiable objects or geometrical figures, but it is harder with abstract figures. An object seen in its typical context is more easily recognized than one that is isolated. One way to figure out the different components is to look carefully at the separate elements and then mentally visualize them together into one figure.Identification is easier when the figures are meaningful (objects, geometrical figures), so details are more relevant than the analysis of the whole figure. However, recognition will be more difficult with abstract figures.

Benefits to Daily Life

When you look at something, you usually recognize it easily because you match what you see with the image stored in your long-term memory. To be able to make the match in everyday situations, we rely upon thousands of stored images, associations, and categorizations in our memory. We use these skills each time we try to distinguish an object from the ground in a painting, visualize ways to redecorate a room or even analyze patterns of traffic when driving.

Resilience Word Scramble

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Word scramble puzzles are a wonderful exercise to do while working on rehabilitation from brain injury due to Autoimmune Encephalitis. IAES has created this one just for you. Learn and grown in your resilience as you challenge yourself to this puzzle. 

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.

Most Popular Visuals

Brain Injury is Misunderstood by Many People 

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IAES is Here For You. You Are Not Alone.

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Featured AE Article

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Rockford family searching for answers as daughter lives with rare autoimmune disease

IAES member, Maria Robinson and her husband Phillip always knew their daughter Kristen was special. They just never imagined she would be counted in the 1 in 100,000 who are diagnosed with Autoimmune Encephalitis each year in the U.S.A. 

Kristen remains in the hospital battling her AE while her parents raise awareness the best way they know how to help others who might be suffering from the same illness, but are not yet identified.  IAES Support Service Coordinator, Mari Wagner Davis, RN, ACM is also featured in the article.

IAES Members In the News

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IAES member Maria Robinson discusses her daughter’s case of Autoimmune Encephalitis (who is currently in the hospital), and IAES Support Services Coordinator, Mari Wagner Davis also shares her experience with AE in this television interview.
Thank you for raising awareness of Autoimmune Encephalitis, and the important work IAES does serving the AE community. We are all holding Kristen in our thoughts and hearts.

Clinician’s Corner

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Antibody Therapies in Autoimmune Encephalitis

In general, immunotherapy for AE follows an escalating approach. In the acute phase, first-line immunotherapy is initiated which mostly involves a combination of high-dose steroids and immunoglobulins or plasma exchange. When first-line therapy fails, one converts to second-line immunotherapy. Alkylating agents such as cyclophosphamide could be the first choice in this stage. However, due to their side effect profile, most clinicians give preference to monoclonal antibodies (mAbs) directed at B cells such as rituximab. Newer mAbs might be added as a third-line therapy in the future or be given even earlier if shown effective.

mAbs targeting B cells (rituximab, ocrelizumab, inebulizumab, daratumumab), IL-6 (tocilizumab, satralizumab), the neonatal Fc receptor (FCRn) (efgartigimod, rozanolixizumab), and the complement cascade (eculizumab) are discussed in Table 1.

Conclusion

Antibodies targeting the CD20 epitope on the surface of B cells are the cornerstone of second-line treatment in AE, originally combined with cyclophosphamide. They have a favorable side effect profile compared to second-line treatments with a different mode of action. Moreover, rituximab has shown to be effective in anti-NMDAR encephalitis as well as in many other AE cases when first-line therapies fail. However, anti-CD20 mAb do not deplete long-lived plasma cells which might underlie treatment-refractory cases and the occurrence of (early) relapses. Therefore, there is an emerging repertoire of mAb that aim to directly (inebulizumab, daratumumab) or indirectly (tocilizumab, sartralizumab) target long-lasting plasmablasts or plasma cells with or without additional B cell depletion. Alternatively, the plasma cell products (i.e. pathogenic antibodies) can be removed with mAb targeting the FcRn (efgartigimod, rozanolixizumab). mAbs that disrupt the complement cascade (eculizumab) are also explored but have fewer biological underpinnings. Future trials are needed to understand whether these third-line treatments are effective, when they need to be initiated and whether they have an acceptable safety profile in combination with previous rituximab administration.

Open Access

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Seronegative Autoimmune Encephalitis: A Challenge for the Neurologist

This easy to understand review delineates pathogenic and clinical advances to date in anti-NMDAR antibody-mediated encephalitis. Anti-NMDAR Ab-mediated encephalitis thus represents an increasingly well-characterized, proportionately common, treatable form of antibody-mediated encephalitis, often with a unique combination of clinical and paraclinical features, benefiting from rapid advances in clinical research over the past two decades. Timely diagnosis and treatment are associated with more favorable patient outcomes. As with other CNS inflammatory disorders however, avoidance of misdiagnosis is also of paramount.

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

Puzzles Featuring Original Art by AE Warriors

 

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 

#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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