Don’t Be Left Behind. Keep Up With THE HERD!
Supportive assistance guide for your AE Journey~
May 2023 1st Edition
In this Issue~
- *Children’s Corner (for all ages): Go Noodle, What is Lego Therapy?
- *ABI Rehabilitation: Hope, Bravery, Love Coloring Challenge
- *Helpful Tips for the AE Warrior: Book: The Body Keeps the Score
- *Most Popular Visuals: Mother’s Day AE Warrior Mom Word Finding Puzzle, Temporal Lobe Seizures
- *Featured AE Article: Ataxia and Autoimmune Encephalitis
- *Video: Autoimmune Encephalitis~What is Autoimmune Encephalitis?
- *Clinician’s Corner: Simplified regimen of combined low-dose rituximab for Autoimmune Encephalitis with neuronal surface antibodies
- *Open Access: Adult-onset temporal lobe epilepsy suspicious for autoimmune pathogenesis: Autoantibody prevalence and clinical correlates
- *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 Mother’s Day AE Bling and Raise Awareness. Check out our new arrivals
- *Shop & Support IAES: Sign up for PayPal’s #GiveAtCheckOut and Amazon Smiles
Ensure your child’s cognitive rehabilitation is motivating and fun with Go Noodle. Make screen time active with 300+ dance videos, yoga exercises, and mindfulness activities for the kids.
Recommended for children aged 4 to 10 years.
What is Lego Therapy?
Legos are a fun activity that provides cognitive stimulation and laughter. Legos also provide multiple forms of stimulation: visual, tactile, kinesthetic, memory deficits, sensory, cognitive, and emotional stimulation.
ABI Rehabilitation From AE
Hope, Bravery, Love Coloring Challenge
Here’s a great art project you can do as a gift to your Mother on Mother’s Day, May 14th. Let your Mother know how much you love her and admire her.
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
Mother’s Day AE Warrior Mom Word Finding Puzzle
Temporal Lobe Seizures
Featured AE Article
Ataxia and Autoimmune Encephalitis
Dr. Spatola reviews the disease process from the prodromal stage to relapse/recovery and lasting deficits. The difference between intracellular and cell surface antibodies is explained and focus is given to the two most common types of AE, anti-NMDAr and LGI1. Studies that have provided outcome expectations are reviewed along with the slow speed of recovery, relapse rates, and lasting deficits many patients experience. There is an excellent Question and Answer period at the end of the presentation.
Simplified regimen of combined low-dose rituximab for Autoimmune Encephalitis with neuronal surface antibodies
18 patients participated in this study, the 3 main findings about rituximab treatment for AE are that: (1) our simplified regimen of low-dose rituximab (100 mg once) combined with common first-line therapy significantly accelerates comprehensive short-term recovery within 1 year, as well as markedly contributing to long-term improvement even after at least 1 year. (2) Our refined protocol of rituximab infusions leads to faster oral prednisolone gradual taper and withdrawal, in parallel with markedly sustained clinical remission and reduced relapses. (3) Opportunity of rituximab schedule shows earlier initiation with better improvement, while frequency of first-line therapy has no influence on satisfactory outcome with rituximab combination.
CONCLUSIONS: Our simplified regimen of combined low-dose rituximab firstly showed significantly accelerating short-term recovery and long-term improvement for AE with NSAbs, in parallel with markedly reduced prednisone dosage and clinical relapses. Moreover, opportunity of protocol showed earlier initiation (≤ 3 months) with better long-term improvement.
Adult-onset temporal lobe epilepsy suspicious for autoimmune pathogenesis: Autoantibody prevalence and clinical correlates
Temporal lobe adult-onset seizures (TAOS) related to autoimmunity represent an increasingly recognized disease syndrome within the spectrum of epilepsies. In this context, certain autoantibodies (autoABs) were often associated with limbic encephalitis (LE). Here, we aimed to gain insights into (a) the distribution of ‘neurological’ autoABs (neuroABs, defined as autoABs targeting neuronal surface structures or ‘onconeuronal’ ABs or anti-glutamate acid decarboxylase 65 (GAD65) autoABs) in a large consecutive TAOS patient cohort, to characterize (b) clinical profiles of seropositive versus seronegative individuals and to find (c) potential evidence for other autoABs. Blood sera/cerebrospinal fluid (CSF) of TAOS patients (n = 800) and healthy donors (n = 27) were analyzed for neuroABs and screened for other autoABs by indirect immunofluorescence on hippocampal/cerebellar sections and immunoblots of whole brain and synaptosome lysates. Serological results were correlated with clinico-neuropsychological features. 13% of TAOS patients (n = 105) were neuroAB+, with anti-GAD65 and anti-N-methyl-D-aspartate receptors (NMDAR) as most frequent autoABs in this group. In our screening tests 25% of neuroAB– patients (n = 199) were positive (screening+), whereas all control samples were negative (n = 27). Intriguingly, key clinico-neuropsychological characteristics including magnetic resonance imaging (MRI) findings, epileptiform electroencephalographic (EEG) activity, and inflammatory cellular infiltrates in CSF were shared to a greater extent by neuroAB+ with neuroAB–/screening+ patients than with neuroAB–/screening– patients. Serological testing in a large consecutive TAOS patient series revealed seropositivity for anti-GAD65 autoABs as the most frequent neuroAB. Intriguingly, neuroAB+ individuals were virtually indistinguishable from neuroAB–/screening+ patients in several major clinical features. In contrast, neuroAB–/screening– TAOS patients differed in many parameters. These data support the potential presence of so far unrecognized autoABs in patients with TAOS.
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 May 30th, 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 Mother’s Day AE Bling and Raise Awareness
Mother’s Day is May 14th. Find that special ‘something-something’ for Mom,
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.