Don’t Be Left Behind. Keep Up With THE HERD!
Supportive assistance guide for your AE Journey~
April 2022 1st Edition
In this Issue~
- *Announcements: New Caregiver Monthly Zoom Support Group, #AETuesdayTries, LGI1 Research Survey, The ExTINGUISH Trial
- *Children’s Corner (for all ages): Children’s Activity Book designed by an AE Warrior, Electroencephalography characteristics to predict one-year outcomes in pediatric anti-NMDA receptor encephalitis
- *ABI Rehabilitation: Mindfulness Coloring Challenge, Worksheet packet for Children, Spring themed Word Scramble
- *Helpful Tips for the AE Warrior: Obtaining Guardianship in
- *Most Popular Visuals: Brain Injury Fact, Brain functions: healthy brain vs injured brain
- *Featured AE Article: More than just anti-NMDAR: the many facets of Autoimmune Encephalitis
- *Podcast: Milkshakes for Marleigh
- *Clinician’s Corner: Mayo Clinic Cases in Neuroimmunology
- *Open Access: Anti-N-Methyl-D-Aspartate Receptor Encephalitis: A Detailed Review of the Different Psychiatric Presentations and Red Flags to Look for in Suspected Cases
- *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
Caregiver Monthly Zoom Support Group
This is a new service for caregivers. The first meeting will take place April 14th 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.
The next monthly #AETuesdayTries zoom meet-up will take place April 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
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
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 Activity Book
Electroencephalography Characteristics to predict one-year outcomes in pediartic anti-NMDAr encephalitis
Loss of normal posterior dominant rhythm (PDR), absence of sleep architecture, and epileptiform discharges are associated with worse outcomes at one year which has not been reported before. EEG characteristics may help prognosticate in NMDARE. Larger studies are needed to confirm these findings.
ABI Rehabilitation From AE
Spring Coloring Challenge
Worksheet Packet for Children
Your young AE Warrior will have fun with these 4 challenging exercises that target multilpul cognitive skills for brain injury rehabilitation from Autoimmune Encephalitis. Practice executive functioning, processing speed, object recognition, and fine motor skills with “Catch the Ladybug”. “Private Eye” helps with attention span and focus. “Dancing with Fireflies” is an exercise that trains visual attention skills, working memory,
and visual-spatial skills. Lastly, “Turn around and around”, a task that aims to train your client’s visual mental imagery
skills, specifically their mental rotation abilities.
Spring Themed Word Scramble
Word scramble puzzles are a wonderful exercise to do while working on rehabilitation from brain injury due to Autoimmune Encephalitis. This challenge has a Spring theme.
Helpful Tips for Patients & Families
Obtaining Guardianship in
Most Popular Visuals
Brain Injury Fact
Brain Functions: healthy brain-injured brain
Featured AE Article
More than just anti-NMDAR: the many facets of
The authors describe an interesting case of anti-N-methyl-D-aspartate receptor (anti-NMDAR) encephalitis, outline the clinical presentation and make suggestions on ways to approach this rare disorder. Here we provide an overview of autoimmune conditions that result in the production of autoantibodies targeting central nervous system proteins mediating autoimmune
encephalitis and offer a perspective on approaches to diagnosis and treatment.
Milkshakes for Marleigh
This podcast is done by IAES member, Kate Fisher. It tells the survival stories of blood product recipients to thank blood donors and encourage new people to donate. Kate’s 5 year old daughter, Marleigh, has been reliant on IVIG since her Autoimmune Encephalitis diagnosis. This first episode tells her story of living with Autoimmune Encephalitis.
Mayo Clinic Cases in Neuroimmunology
- Provides detailed case-based treatise on the spectrum of demyelinating CNS disorders, autoimmune neurological disorders, and their mimics
- Offers clinical pearls and range of diagnostic tests available to differentiate immune mediated neurological disorders from others
- Covers the diversity of neurological disorders now known to be autoimmune and the revised classification of MS, including differentiated progressive forms
Anti-NMDAR Encephalitis: A Detailed Review of the Different Psychiatric Presentations and Red Flags to Look for in Suspected Cases
For those trying to familiarize themselves with this diagnosis, this is a good place to start. The review included a general scheme that covers almost all aspects of the psychiatric presentation, similarities, and differences in contrast to other differential diagnoses, in addition to clinical pearls that aid diagnosis. However, this paper did not discuss the different ways this disorder presents in pediatrics; hence, this remains an area future reviews might be more inclusive of.
AE Trivia Playing Cards
The perfect companion for patients, caregivers & therapists
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
|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.
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.
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.
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.