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theherd - THE HERD March 2022 2nd edition

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

Selected Highlighted News in the field of Autoimmune Encephalitis~ March 2022 2nd Edition

In this Issue~

 

  • *Announcements: March Brain Injury Awareness Month “SEE ME” Video, LGI1 Research Survey, The ExTINGUISH Trial, #AETuesdayTries
  • *Children’s Corner (for all ages): Children’s Activity Book designed by an AE Warrior
  • *ABI Rehabilitation: ‘Resilience’ themed Word Scramble
  • *Helpful Tips for the AE Warrior:  Obtaining Guardianship in
    Emergency Situations 
  • *Most Popular Visuals: Before & After Brain Injury, Words of Wisdom for Brain Injury Awareness Month
  • *Featured AE Article: A woman thought she was in ‘The Walking Dead’ and acted like she was on PCP, but it was her immune system fighting a benign Ovarian tumor
  • *Podcast: Paraneoplastic neurological syndromes: a practical approach to diagnosis and management
  • *Clinician’s Corner: Neurological and Cognitive Outcomes After antibody-negative Autoimmune Encephalitis in Children
  • *Open Access: 
  •   *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

Annoucements

 

“SEE ME” Brain Injury Awareness Month Video

IAES has created this impactful video, SEE ME, to spread awareness of living with brain injury caused by Autoimmune Encephalitis. Meet AE Warriors of all ages who capture your attention by their emotional plea, “I want you to SEE ME!”

Brain injury is largely an invisible disability. The person may look untouched by challenges and disability when in actual fact, all areas of their lives have been negatively impacted.

The #SeeMe campaign brings attention to the challenges of living with brain injury. Join the #SeeMe campaign during March, and share this video along with your brain injury story on your social media accounts using the hashtag #SeeMe #BrainInjuryAwareness #IAES #AutoimmuneEncephalitis.

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.

#AETuesdayTries 

The next monthly #AETuesdayTries zoom meet-up will take place March 29th, 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.

Children’s Corner

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Children’s Activity Book

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As a special treat for our young AE Warriors, Celia Fermon, (an AE Warrior herself) along with her son, Andres Chapiro F. have created this wonderful Activity Book to honor our brave and wonderful children!
You can find it on the IAES website under the ‘For Patients’ tab>Children’s Corner. 

ABI Rehabilitation From AE

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A ‘Resilience’ Themed 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. This one was specifically created to encourage AE Warriors and honors our monthly zoom meet-up #AETuesdayTries.

Helpful Tips for Patients & Families

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Obtaining Guardianship in
Emergency Situations

Early in our illness we may be unable to manage our healthcare decisions, money or other decisions. In order for your spouse or parent to be able to be the decision maker, they would have to obtain temporary guardianship. This article explains the process.

Most Popular Visuals

Before and After Brain Injury

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Featured Article

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A woman thought she was in ‘The Walking Dead’ and acted like she was on PCP, but it was her immune system fighting a benign Ovarian Tumor

The summer after graduating college, Lauren Kane binged a lot of TV — specifically, she couldn’t get enough of “The Walking Dead.”

Her mother didn’t think much of her daughter’s sluggish behavior; after all, she was a recent graduate and deserved the downtime.

But when Lauren seemed feverish and unsteady on her feet one evening, it prompted a visit to the hospital. In the emergency room, Lauren’s mental state began to deteriorate. She grew violent towards her doctors, and in the weeks that followed, her sense of reality blurred with the post-apocalyptic world she had been watching on TV.  She was later diagnosed with anti-NMDAr encephalitis.

Podcast

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Paraneoplastic neurological syndromes: a practical approach to diagnosis and management

Dr Sophie Binks and Professor Sarosh Irani, from the Oxford Autoimmune Neurology Group, about their recent paper about a practical approach to diagnosis and management of paraneoplastic neurological syndromes.

Clinician’s Corner

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Neurological and cognitive outcomes after antibody-negative autoimmune encephalitis in children

Ab-negative AE was associated with poorer cognitive outcomes than NMDARE at 1-year follow-up. Further studies are required to evaluate if immunotherapy can be optimized to improve outcome.

RESULTS

Forty-four patients (26 females, 18 males, median age 9y 2mo [interquartile range 4y 5mo–11y 8mo], 23 with NMDARE) with a diagnosis of autoimmune encephalitis were included. Postencephalitic epilepsy was more frequent after Ab-negative AE compared to NMDARE (61% vs 14%, p=0.002). Cognitive testing was performed in a subset of patients (n=21; Ab-negative AE=11, NMDARE=10). Full-scale IQ was lower after Ab-negative AE than NMDARE (mean IQ 75 vs 92, p=0.02), primarily because of reduced verbal comprehension index (80 vs 98, p=0.01) and working memory index (77 vs 95, p=0.09). The cognitive function most commonly impaired was executive function (80% [8/10] vs 22% [2/9]).

Open Access

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Use and Safety of Immunotherapeutic Management of N-Methyl-d-Aspartate Receptor Antibody Encephalitis A Meta-analysis

If you have a diagnosis of anti-NMDAr encephalitis, this newly published key paper is one you should be aware of. It was mentioned in Dr. Lim’s and Dr. Abbatemarco’s webinars last month for AE Awareness Month. A meta-analysis of 1,550 patients with NMDARE.

Key findings

– Factors associated with good functional outcomes were adolescent age and first-line treatment with either plasmapheresis alone, corticosteroids with IVIG, or corticosteroids with IVIG and plasmapheresis.

– Factors associated with poor functional outcome were infant or older adult age, ICU admission, EEG extreme delta brush pattern, lack of immunotherapy ≤30 days of onset, and maintenance IVIG treatment for ≥six months.

– Relapsing disease was associated with adolescent age, and non-relapsing disease was associated with rituximab use or maintenance IVIG for ≥six months.

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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