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
Caregiver Monthly Zoom Support Group
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.
“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.
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
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
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
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
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
Gelastic & Dacrystic Seizures
Featured AE Article
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.
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.
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.
Autoantibody Encephalitis: Presentation, Diagnosis and Management
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
Shop for Your AE Bling and Raise Awareness
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
|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.