Don’t Be Left Behind. Keep Up With THE HERD!
Supportive assistance guide for your AE Journey~
May 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): 10-page Coloring AE Warrior Worksheet set, Usefulness of brain FDG PET/CT imaging in Pediatric patients with Suspected Autoimmune Encephalitis From a Prospective Study
- *ABI Rehabilitation: Hope, Bravery & Love Coloring Challenge, Cognitive Therapy Rehabilitation Exercises, AE Awareness Word Search
- *Helpful Tips for the AE Warrior: Summer Camps
- *Most Popular Visuals: A Letter From Your Brain, Healing From Trauma
- *Featured AE Article: The Safety and efficacy of Intravenous Immunoglobulin in Autoimmune Encephalitis
- *Podcast: Autoimmune Encephalitis: clinical spectrum and management
- *Clinician’s Corner: Paraneoplastic and Other Autoimmune Encephalitides: Antineuronal Antibodies, T Lymphocytes, and Questions of Pathogenesis
- *Open Access: Contemporary advances in anti-NMDAR antibody (Ab)-mediated encephalitis
- *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
This is a new service for caregivers. The next monthly meeting will take place May 12th 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 May 31st, 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 Corner
10 page AE Warrior Coloring Workseet Set
Usefullness of brain FDG PET/CT imaging in Pediatric patients with Suspected Autoimmune Encephalitis From A Prospective Study
Large lobar hypometabolism was found in 61 children, of which 54 (88.5%) children were finally diagnosed with AE. The sensitivity, specificity, and accuracy of FDG PET/CT for diagnosis of AE were 93.1%, 84.4%, and 89.3%, respectively, with a positive predictive value of 88.5% and a negative predictive value of 90.5%. The most common involved with hypometabolism was the parietal lobe, followed by occipital and frontal lobes, finally the temporal lobe on PET/CT in children with AE.
Conclusion: Brain FDG PET/CT imaging has high specificity, sensitivity, and accuracy for diagnosis of AE in clinical suspected AE children.
ABI Rehabilitation From AE
Hope, Bravery, Love Coloring Challenge
Cognitive Therapy Rehabilitation Exercises
Visual Attention Visual Memory Working MemoryAutoimmune Encephalitis Word Search Puzzle
Word search 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 own AE awareness as you challenge yourself to this puzzle.
Helpful Tips for Patients & Families
Summer Camps
‘Tis the season to register for summer camps. If you think that your child’s special needs will prevent him or her from participating in a summer camp, it’s time to think again. Many camps offer specialized medical care for specific disabilities or one-on-one buddies, while other camps provide tutoring for individuals with learning disabilities in addition to outdoor activities. Here’s a run-down of the most popular camps for kids and adults with special needs.
Most Popular Visuals
A Letter From Your Brain
Healing From Trauma
Featured AE Article
Safety and efficacy of Intravenous Immunoglobulin in Autoimmune Encephalitis
18 of 23 patients completed the study.
Interpretation: IVIG improved neurological functional outcomes, and the improvement was evident by day 8. Adverse effects were tolerable. These data provide the prospective evidence regarding the efficacy of IVIG in improving the functional outcomes of autoimmune encephalitis.
Podcast
Autoimmune Encephalitis: clinical spectrum and management
Autoimmune encephalitis comprises a group of disorders in which the host immune system targets self-antigens expressed in the central nervous system (CNS). Some of the best-characterized diseases are associated with autoantibodies that target neuroglial antigens. These autoantibodies are considered pathogenic because they are directed against the extracellular—and hence in vivo exposed—domains of their target antigens.
Associate Editor of Practical Neurology, Dr Tom Hughes, Department of Neurology, Cardiff, 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
Paraneoplastic and Other Autoimmune Encephalitides: Antineuronal Antibodies, T Lymphocytes, and Questions of Pathogenesis
Autoimmune and paraneoplastic encephalitides represent an increasingly recognized cause of devastating human illness. Two groups of antibodies have been detected in affected patients. Antibodies in the first group are directed against neuronal cell surface membrane proteins. (Such as anti-NMDAr and LGI1). Antibodies in this group produce non-lethal neuronal dysfunction, and their associated conditions often respond to treatment. Antibodies in the second group, (such as anti-Yo antibody, found in patients with rapidly progressive cerebellar syndrome, and anti-Hu antibody, associated with encephalomyelitis), react with intracellular neuronal antigens. These antibodies are characteristically found in patients with underlying malignancy, and neurological impairment is the result of neuronal death.
Open Access
Contemporary advances in anti-NMDAR antibody (Ab)-mediated encephalitis
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
Doctor Recommended
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
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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. |
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.
