Don’t Be Left Behind. Keep Up With THE HERD!
Supportive assistance guide for your AE Journey~
June 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): Our Fox Has Lost His Socks, The impact of childhood epilepsy on academic performance: A population-based matched cohort study
- *ABI Rehabilitation: How Dancing With The Fireflies Targets Visual Attention, AE Caregiver Word Search
- *Helpful Tips for the AE Warrior: Book Recommendations: Unwillable, In a Blurr
- *Most Popular Visuals: Brain Injury is Misunderstood, Common Cognitive Problems from Brain Injury after AE
- *Featured AE Article: Neuropsychological implication in possible antibody-negative limbic encephalitis: a clinical report
- *Podcast: Susannah Cahalan on Anti-NMDAr Encephalitis and Her Journey to Diagnosis
- *Clinician’s Corner: The importance of tissue-based assay in the diagnosis of autoimmune encephalitis
- *Open Access: Risk Factors for Mortality in Anti-NMDAR, Anti-LGI1, and Anti-GABABR Encephalitis
- *AE Trivia Cards: The single most important educational/rehabilitation tool for AE
- *AE Warrior Store: Shop our AE Warrior Dad collection for Father’s Day
- *Shop & Support IAES: Sign up for PayPal’s #GiveAtCheckOut and Amazon Smiles
Announcements ~
Caregiver Monthly Zoom Support Group
The next monthly meeting will take place July 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.
#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
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
Our Fox Has Lost His Socks
Author Desiree Wolter has written a gentle children’s story based on true events of when her husband became ill with autoimmune encephalitis. Desiree is an IAES member from Australia. A percentage of proceeds from the sale of this book will go to supporting IAES’ mission.
Our Fox Has Lost His Socks is destined to be the most prized addition to anyone’s library who has a family member with a serious illness, and a brilliant gift for all ages. AE is not mentioned specifically, but you will recognize it by the “Brain on fire” discription.
‘This is our fox with his white tidy socks that he wears every day the exact same way! Up to the shin and just under the knee, white and crisp and as clean as can be until one day you see, he started to act hmmm …. Differently!’
Let Mamma Fox, Fox Red and Fox Blue take you on a funny yet sad journey of when, as Dr Otter explains it “Pappa Fox’s brain is on fire” Pappa Fox acts out of character paints everything pink, acts very silly and confused and loses his tidy white socks. Will life ever be the same for this fox family? Will Pappa Fox ever find his Socks again?
The Impact of Childhood Epilepsy on Academic Performance: A population-based matched cohort study
Many AE patients receive the dual diagnosis of epilepsy. This research points out the need for additional educational support and can be used when discussing educational plans, IEPs or 504 plans, with student’s teachers.
Conclusion: Young people hospitalized with epilepsy have higher risk of not achieving minimum standards for numeracy and reading and not completing high school compared to matched peers. There is a need for effective strategies and interventions (e.g., early seizure control and improved multidisciplinary management and care coordination) to minimize the potential adverse effect of epilepsy on education and its sequelae such as early school leaving, unemployment and poverty in adulthood.
ABI Rehabilitation From AE
How Dancing With The Fireflies Targets Visual Attention
HappyNeuron Pro’s exercises are wonderful assistance to your brain injury rehabilitation from autoimmune encephalitis. One of their most popular visual attention exercises is Dancing with the Fireflies. Learn how Dancing with the Fireflies targets visual attention in this blog post.
This exercise targets visual attention and working memory by requiring you to track the trajectory of moving objects and anticipate their direction in your visual field. Using your prefrontal cortex, you must process and organize the incoming information along with analysis skills to recognize the patterns being generated in each sequence. You will also have to make a decision on where to focus your attention to better help you recognize and detect the patterns being generated in order to accurately pick them out of a sequence.
AE Caregiver Word Search
Word Search puzzles are a wonderful exercise to do for brain injury rehabilitation from AE. IAES has created several word search puzzles that feature hidden keywords that will encourage and aid in your learning and understanding of autoimmune encephalitis.
Challenge yourself with this AE Caregiver word search puzzle and others that you will find as free downloads on the ‘Rehab Cognitive Exercises’ page under the ‘For Patients’ tab on the IAES website.
Helpful Tips for Patients & Families
Book Recommendations: 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.
Unwillable
Most Popular Visuals
Brain Injury in Misunderstood
Common Cognitive Problems from Brain Injury After AE
Featured AE Article
Neuropsychological implication in possible antibody-negative limbic encephalitis: a clinical case report
This study, just published, is a very helpful case study for those with Limbic Encephalitis or sero-negative (antibody negative) AE where there is limbic involvement.
The ‘Discussion’ section details how the patient’s memory was affected and explains what the different areas of the limbic system due when it comes to memory. Since most of us have limbic involvement, this is an excellent case study to learn by.
Podcast
Susannah Cahalan on Anti-NMDAr Encephalitis and Her Journey to Diagnosis
Autoimmune Encephalitis
In this episode, Dr. Nath is joined by journalist and New York Times bestselling author, Susannah Cahalan. Susannah recounts her journey as one of the earliest individuals to be diagnosed with anti-NMDA encephalitis and speaks about writing her memoir Brain on Fire. Dr. Nath is then joined by Dr. Josep Dalmau, professor at the Catalan Institute for Research and Advanced Studies at the University of Barcelona and adjunct professor of neurology at the University of Pennsylvania. Dr. Dalmau shares how he and his colleagues discovered anti-NMDA encephalitis and the future of treatment options for patients.
Clinician’s Corner
The importnace of tissue-based assay in the diagnosis of autoimmune encephalitis
Conclusion
Non-antigen-specific assays, such as IFA, can identify antibodies not detected in commercially available kits and therefore are recommended in the evaluation of autoimmune encephalitis.
Open Access
Risk Factors for Mortality in Anti-NMDAR, Anti-LGI1, and Anti-GABABR Encephalitis
Conclusion:
The general mortality rate of anti-NMDAR, anti-LGI1, and anti-GABABR encephalitis was 15%. Age at onset and type of autoimmune encephalitis antibody were independent predictors of death in these patients.
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
Shop our AE Warrior Dad Collection for Father’s Day
Whether your Dad is an autoimmune encephalitis patient or parent of a child fighting AE, these AE Warrior Dad products proclaim how proud you are of his bravery and fighting spirit. Great gifts for father’s day, birthdays or anytime your Dad needs his spirits lifted. Designs can be transferred to any product you prefer.
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.
