Don’t Be Left Behind. Keep Up With THE HERD!
Supportive assistance guide for your AE Journey~
April 2023 2nd Edition
In this Issue~
- *Children’s Corner (for all ages): 5 Finger Breathing Brain Break, Life-altering effects on children when a family member has an acquired brain injury; a qualitative exploration of child and family perceptions
- *ABI Rehabilitation: Be the best version of yourself coloring page
- *Helpful Tips for the AE Warrior: Book: The Body Keeps the Score
- *Most Popular Visuals: I am an AE Warrior!, Outcomes in AE
- *Featured AE Article: A Feline Model of Spontaneously Occurring Autoimmune Limbic Encephalitis
- *Video: Autoimmune Encephalitis~What is Autoimmune Encephalitis?
- *Clinician’s Corner: Brain magnetic resonance imaging predictors in anti-Nmethyl-D-aspartate receptor encephalitis
- *Open Access: Retrospective Pediatric Cohort Study Validates NEOS Score and Demonstrates Applicability in Children With Anti-NMDAR Encephalitis
- *Monthly Zoom Support Groups for Patients & Caregivers: Caregiver Monthly Zoom Support Group, #AETuesdayTries for patients and caregivers
- *AE Studies & Clinical Trial: The IGNITE Study, The ExTINGUISH Trial
- *AE Trivia Cards: The Single Most Important Educational/Rehabilitation Tool for AE
- *AE Warrior Store: Shop for Your AE Bling and Raise Awareness. Check out our new arrivals
- *Shop & Support IAES: Sign up for PayPal’s #GiveAtCheckOut and Amazon Smiles
5 Finger Breathing Brain Break
Slowly trace the outside of the hand with the index finger, breathing is when you trace up a finger, and breathing out when you trace down the finger. You can also do this breathing exercise using your own hand.
Life-altering effects on children when a family member has an acquired brain injury; a qualitative exploration of child and family perceptions
The effects of acquired brain injury can be unpredictable and alter the lives of the affected individual and their families. The goal of this study was to evaluate how children and other family members are affected and to understand the best approach to provide support.
ABI Rehabilitation From AE
Spring Coloring Challenge
Art therapy addresses cognitive skills, attention, organization, and fine motor skills and has been shown to decrease stress and improve mindfulness. It’s a wonderful way to re-learn and re-train your brain from the brain injury caused by AE.
Helpful Tips for Patients & Families
Book: The Body Keeps the Score
Recommended by IAES Chief Resilience Officer, Tessa McKenzie.
A pioneering researcher transforms our understanding of trauma and offers a bold new paradigm for healing in this New York Times bestseller.
Trauma is a fact of life. Veterans and their families deal with the painful aftermath of combat; one in five Americans has been molested; one in four grew up with alcoholics; one in three couples have engaged in physical violence. Dr. Bessel van der Kolk, one of the world’s foremost experts on trauma, has spent over three decades working with survivors. In The Body Keeps the Score, he uses recent scientific advances to show how trauma literally reshapes both body and brain, compromising sufferers’ capacities for pleasure, engagement, self-control, and trust. He explores innovative treatments—from neurofeedback and meditation to sports, drama, and yoga—that offer new paths to recovery by activating the brain’s natural neuroplasticity. Based on Dr. van der Kolk’s own research and that of other leading specialists, The Body Keeps the Score exposes the tremendous power of our relationships both to hurt and to heal—and offers new hope for reclaiming lives.
Most Popular Visuals
I am an AE Warrior!
Outcomes in AE
Featured AE Article
A Feline Model of Spontaneously Occurring Autoimmune Limbic Encephalitis
This study describes a large cohort of 32 cats with AE who tested positive for voltage-gated potassium channel (VGKC)-antibodies, of which 26 (81%) harbored LGI1-antibodies. We delineate their clinical and paraclinical features as well as long-term outcomes up to 5 years. Similar to human cases, most cats with LGI1-antibodies had a history of focal seizures (83%), clustering in the majority (88%), with interictal behavioral changes (73%). Among feline AE patients, there was no seizure type or other clinical characteristic that could distinguish LGI1-antibody positive from negative cats, unlike the pathognomic faciobrachial dystonic seizures seen in humans. Although six cats were euthanased in the first year for epilepsy-associated reasons, those attaining at least 1-year survival had good seizure control and quality of life with appropriate veterinary care and medication. Acute-phase immunotherapy (prednisolone) was given to the most severely unwell cases and its effect is retrospectively evaluated in 10 cats. Our data show LGI1-antibodies are an important cause of feline encephalitis, sharing many features with human AE. Further research should examine optimal therapeutic management strategies and the cause of LE in seronegative cats, building on paradigms established in the counterpart human disease.
Autoimmune Encephalitis ~ What is Autoimmune Encephalitis?
Autoimmune Encephalitis (AE) is a disease that damages the cells of the brain, neurons. During Autoimmune Encephalitis, the immune system gets confused by certain types of viruses and tumors and attacks neurons with antibodies. This video will describe: What is Autoimmune Encephalitis, How AE might be caused, What happens to neurons during AE, and then discuss some treatment options. Always consult with your doctors about what is right for you.
Brain magnetic resonance imaging predictors in anti-Nmethyl-D-aspartate receptor encephalitis
RESULTS: Initial MRI showed typical abnormalities in 65 patients (45.1%); of these, 34 (29.3%) developed recurrence and 10 (9.4%) had poor prognosis (mRS ≥3). Binary logistic regression analyses revealed that insula abnormalities were associated with acute seizure (odds ratio [OR] = 3.048, 95% confidence interval [CI]: 1.026-9.060) and white matter lesions were associated with cognitive impairment (OR = 2.730, 95% CI: 1.096-6.799). Risk factors for a poor 2-year prognosis included a higher number of brain MRI abnormalities (OR = 1.573, 95% CI: 1.129-2.192) and intensive care unit (ICU) admissions (OR = 15.312, 95% CI: 1.684-139.198). The risk factors for 2-year recurrence included abnormalities of the thalamus (HR = 3.780, 95% CI: 1.642-8.699).
INTERPRETATIONS: Brain MRI features of patients with NMDAR encephalitis were associated with clinical manifestations, prognosis, and recurrence. Higher numbers of MRI abnormalities and ICU admissions were predictive of poor prognosis. Abnormalities of the thalamus constituted a recurrence-related risk factor.
Retrospective Pediatric Cohort Study Validates NEOS Score and Demonstrates Applicability in Children With Anti-NMDAR Encephalitis
Results: The NEOS score reliably predicted poor clinical outcome (mRS ≥3) in children in the first year after diagnosis (p = 0.0014) and beyond (p = 0.036, 16 months after diagnosis). A score adapted to the pediatric cohort by adjusting the cutoffs of the 5 NEOS components did not improve predictive power. In addition to these 5 variables, further patient characteristics such as the “Herpes simplex virus encephalitis (HSE) status” and “age at disease onset” influenced predictability and could potentially be useful to define risk groups. NEOS also predicted cognitive outcome with higher scores associated with deficits of executive function (p = 0.048) and memory (p = 0.043).
Monthly Zoom Support Groups For Patients and Caregivers
Caregiver Monthly Zoom Support Group
The next monthly meeting will take place on May 11th at 6 pm PST/9 pm EST. The IAES Caregiver Support Group takes place on 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 on April 25th, 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.
AE Studies and Clinical Trials
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).
This trial is actively recruiting. 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.
The IGNITE Study
Drs. Emmanuel Mignot and Sergio Muñiz-Castrillo and their research group at Stanford University in California have requested IAES’s help in recruiting autoimmune encephalitis patients for The IGNITE study. This study aims to investigate the genetic predisposition to autoimmune encephalitis and related disorders. Patients must have an identified antibody to participate. The patient may have an active case or be in remission. This exciting study includes patients of all ages and all antibodies. Patients outside of the United States will need the physician who diagnosed them, usually a neurologist, to contact Dr. Muñiz-Castrillo directly. No travel is involved. Saliva and blood kits will be sent to you in the mail and can be returned by mail or dropped off at named participating pharmacies.
Your participation will help uncover that answer and your act of advocacy will eventually enhance lives! The first step to take is to fill out and submit the screening survey below.
Seronegative/antibody-negative patients can play an active advocacy role by distributing the IGNITE study flyer to their diagnosing doctor, and asking that it be posted at the infusion center you use, as well as hospitals and clinics you visit.
Sharing the flyer on your social media platforms will assist us in getting the highest level of participation possible.
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
Check out the two new t-shirt designs at the Autoimmune Encephalitis Warrior Store, the “Don’t Quit/Do IT #AEWarrior” and the colorful retro #AEWarrior design.
AE Warrior Store products proclaim the bravery and fighting spirit it takes to fight AE and regain your health. Shirts, hoodies, hats, puzzles, mugs, and gift items make this your one-stop shop for patients, caregivers, and friends who have a vested interest in raising awareness for Autoimmune Encephalitis. Designs can be transferred to any product you prefer. The proceeds of your purchase will immediately support Autoimmune Encephalitis patients, caregivers, and families who are walking this difficult journey.
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.
On June 16th, 2022, the International Autoimmune Encephalitis Society and Tabitha Orth, IAES President, and Founder, officially became the 7,315th “point of light”. The award was founded by President George H.W. Bush in 1990.