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THE HERD Supportive Guide April 1st editiion

theherd - THE HERD Supportive Guide April 1st editiion

Don’t Be Left Behind. Keep Up With THE HERD!

 April 2024, 1st edition

Supportive Assistance Guide For Your AE Journey

In this Issue~

 

  • *Announcements: Study Questionnaire: Patient, Caregiver, and Clinician input is needed, IGNITE study,  #GiveAGiftofHope, AE Awareness Merchandise
  • *Children’s Corner: The Kingdom of Thoughts and NORSE (New-Onset Refractory Status Epilepticus)
  • *ABI Rehabilitation: Spring Mindfulness
  • *Helpful Tips for the AE Warrior: Obtaining Guardianship in Emergency Situations
  • *Most Popular Visuals: Understanding the Functions of the Temporal Lobes 
  • *Featured AE Article: Autoimmune Encephalitis in Children
  • *Video: Antibody-Negative (aka Seronegative) Autoimmune Encephalitis
  • *Clinican’s Corner: A Near-Fatal Encounter with Acute Suicidal Behavior in Anti-N-methyl-D-aspartate Autoimmune Encephalitis
  • *Open Access: Sudden unexpected death in epilepsy and ictal asystole in patients with autoimmune encephalitis: a systematic review
  • *Monthly Zoom Support Groups For Patients & Caregivers: Caregiver Monthly Zoom Support Group, #AETuesdayTries for patients and caregivers   
  • *AE Studies & Clinical Trials: Cielo clinical trial to compare Satralizumab with placebo in anti-NMDAr and LGI1 patients, The ExTINGUISH Trial
  • *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

Annoucements

 

Study Questionnaire: Patient, Caregiver, and Clinician input is needed

IAES has been contacted by a Ph.D. student at the University of Coimbra in Portugal, who is a scientific illustrator and science communicator, conducting research as part of her doctoral project that investigates how to design information about Autoimmune Encephalitis that will help patients and their families better understand their medical condition. For that, she needs the help of Autoimmune Encephalitis patients, recovered patients, caregivers, and clinicians.

You know how difficult it is to understand AE and all aspects of that journey. This is your opportunity to see that information is created based on your needs.

This questionnaire is directed to patients, recovered patients, and caregivers who are living or have lived with a diagnosis of Autoimmune Encephalitis. We want to understand the information that patients and family members need and what is important for them to understand about AE. This needs assessment includes their views on AE-related information: what is difficult to understand; what is important within this information; and the types of information sources used to search for AE.

Additionally, there is a questionnaire directed to clinicians who have experience in diagnosing and/or following up with patients with Autoimmune Encephalitis. It aims to understand the clinicians’ point of view on patients’ (and caregivers’) needs for information about AE. Thus, this questionnaire seeks to gather clinicians’ insights on topics including the difficulties of patients and caregivers in accessing and understanding AE-related information; challenges of clinicians in communicating AE-related information; and their opinion on the AE-related topics that are more important to be communicated.

Your participation will improve your ability to understand complex issues around AE in a visually easy way. Let’s create this positive change together. 

IGNITE STUDY

Dr. Emmanuel Mignot’s Lab at Stanford is conducting an exciting study working on unraveling the genetic associations of anti-NMDA encephalitis to advance patient care even more.

The research team has made significant strides in understanding autoimmune encephalitis, particularly anti-NMDAR encephalitis.
This research group is the pioneer in exploring their genetic results in the USA with thousands of patients worldwide.
 
Unfortunately,  they are currently facing challenges in recruiting the expected number of patients in the U.S.A., and need your help!
The research team has had a low response from anti-NMDAr patients and needs their participation to meet their goals.
This is your chance to create positive change for future AE patients.
 
Participation for USA patients is uncomplicated and comes at no cost. Participants are only required to provide their clinical history and a simple saliva sample, which is conveniently collected at home using the kit they provide.

 

Caregivers can assist their loved ones if needed. This is a golden opportunity for all of us to make the future a brighter one for the worldwide AE community. 

#GiveAGiftofHope

Invest in Creating the World

You Would Like to See

  • Autoimmune Encephalitis was identified and diagnosed quickly.
  • Patients and families receive the care and support they need throughout their experience.
  • Research that will lead to a cure.

You can help IAES create the world we all want to live in by supporting the International Autoimmune Encephalitis Society with a donation. Every single person has the power to change the world. Now more than ever we are called to make a difference.

We are so grateful for IAES’ ability to save lives and improve the quality of lives for those touched by autoimmune encephalitis and the opportunity to continue to serve. We’re humbly asking for your support. 

Small donations of $10-$25 can make an impact. Making your donation repeat monthly ensures our ability to serve the community with the hope of one day finding a cure.

Your support is essential and very much appreciated.

AE Warrior Store

Shop for AE Bling and Raise Awareness

 The Brain On Fire design was created by IAES founder, Tabitha Andrews Orth and is copyrighted by the International Autoimmune Encephalitis Society (IAES). The design names many of the most common symptoms experienced in Autoimmune Encephalitis and where in the brain that symptom is controlled. Spread awareness for Autoimmune Encephalitis. The phrase, “Brain on Fire” references a best-selling book written by Susanah Cahalan who has given permission for IAES to use the phrase for this collection.

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.

Children’s Corner

The Kingdom of Thoughts and NORSE (New-Onset Refractory Status Epilepticus)

NORSE , a tricky wizard, casts a spell on the Brainy Bunch, making their electrical signals go haywire. This causes a big commotion in the Kingdom of Thoughts. Help your child understand their seizure disorder with this entertaining tale.

ABI Rehabilitation From AE

In recognition of Brain Injury Awareness Month, IAES has this brain maze puzzle challenge for you.

Maze puzzles improve cognitive skills. They work like a brain-boosting exercise. Solving a maze makes you think, reason, and remember. Simultaneously achieving all of these, sharpens the individual’s memory, builds their focus, and increases the concentration level of their minds to a great extent. Autoimmune Encephalitis leaves the patient with brain injury. Re-learning and re-training your brain is the focus of rehabilitation.

Helpful Tips For AE Warriors  

Obtaining Guardianship in Emergency Situations  

Early in our illness, we may be unable to manage our healthcare decisions, money or other decisions. For your spouse or parent to be able to be the decision maker, they would have to obtain temporary guardianship. This article explains the process.

Most Popular Visuals

Understanding the Functions of the Temporal Lobes  

Understanding the functions of the temporal lobes will help you understand your AE Warrior if their temporal lobes have been impacted by AE.

Featured AE Article

Autoimmune Encephalitis in Children  

Pediatric AE diagnosis and treatment approaches have evolved tremendously since the initial discovery of antibodies to the NMDA-R. With advances in reliable antibody detection methods, the field can more confidently identify autoantibodies in patients with corresponding symptoms of AE. This paper reviews the most common autoantibodies found in children presenting with features of AE.

Featured Video 

Antibody-Negative (aka Seronegative) Autoimmune Encephalitis

Dr. Dalmau begins by describing the types of antibodies found in this group of diseases. Currently, there are 17 different types of identified AE. A case study of a patient who had a differential diagnosis of anti-NMDAr AE illustrates the importance of the patient’s clinical presentation not comporting with AE. Differential diagnoses and the process of arriving at a diagnosis, errors in past diagnoses, and antibody testing with an emphasis on tissue-based assays not being reliable, and the proposed steps to refine the diagnosis of AE are reviewed. How to treat antibody-negative but probable AE. What is the future direction we are taking to advance the understanding of this group of diseases? The presentation is followed by a 50-minute lively and detailed question-and-answer period.

Clinician’s Corner  

A Near-Fatal Encounter with Acute Suicidal Behavior in Anti-N-methyl-D-aspartate Autoimmune Encephalitis

Suicidality is one of the most fatal complications associated with anti-NMDARE. Physicians should maintain a heightened awareness of the grave risk of suicidality due to newly developed seizures, psychotic symptoms, and deteriorating neuropsychiatric conditions that may indicate AE onset. Further studies and increased interest are warranted to explore suicidality in anti-NMDARE. Collaborative, timely diagnostic and differential decision-making processes, coupled with meticulous attention from a multidisciplinary approach during critical stages, are crucial for achieving a rapid diagnosis and facilitating neuropsychiatric recovery.

Open Access

Sudden unexpected death in epilepsy and ictal asystole in patients with autoimmune encephalitis: a systematic review

Autonomic manifestations of seizures are very common in some patients with epilepsy, especially in those with temporal lobe epilepsy (TLE). These can range from goosebumps, epigastric sensations, palpitations, syncope, arrhythmias, heat or cold sensations, sexual arousal, and respiratory changes.

 Ictal asystole (IA) and sudden unexpected death in epilepsy (SUDEP) are important risks for people with epilepsy, and their pathophysiology is only partially understood. However, the involvement of autonomic pathways is a major hypothesis.  Temporal lobe epilepsy (TLE) is associated with autonomic manifestations during or after seizures. Therefore, people with limbic AE can be at higher risk for these events. The results of the present study show that people with limbic AE can manifest SUDEP and IA along with other autonomic alterations.

We hope that this work can emphasize the possible link between autonomic alterations in AE-related TLE and SUDEP or IA, promoting the research and stimulating clinicians to describe these cases in the literature.

The presence of a link between these pathologies can have extremely important implications: AE is a treatable cause of epilepsy, so treating these patients can lead to a diminished risk of death (because of SUDEP) and of falls and injuries (because of asystole and syncope).

Monthly Zoom Support Groups For Patients and Caregivers

 

Caregiver Monthly Zoom Support Group

 

The next monthly meeting will take place on April 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 Warriors’. 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 Monthly Zoom Support Group

 

The next monthly #AETuesdayTries zoom meet-up will take place on April 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 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 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.

Studies/Trials

Cielo Clinical Trial to Compare Satralizumab with Placebo in anti-NMDAr and LGI1 patients

Registration is open. If you are 12 years+ with a diagnosis of anti-NMDAr AE, or 18 years+ with a diagnosis of LGI1 AE and symptoms began less than 9 months ago, you may qualify for this rare clinical trial. 10 countries currently participating. A clinical trial doctor with top expertise in AE will oversee your care.  Rescue care/standard AE care is given to placebo patients.

The trial aims to show Satralizumab is safe and effective for the treatment of Autoimmune Encephalitis and become FDA-approved. Your participation will improve the lives of all future patients. Help us reach the best outcomes for all. Ask your doctor about this trial.

TheExTINGUISH 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.

AE Trivia Playing Cards

The perfect companion  for patients, caregivers & therapists

Doctor Recommended

Created by IAES and in collaboration with Josep Dalmau, M.D., Ph.D. (The World’s leading expert on AE).  This deck answers 52 of the most commonly asked questions about AE and doubles as a rehabilitation tool.  Increase your knowledge and become a strong advocate quickly and easily with AE trivia cards. 

We appreciate the National Organization of Rare Diseases’ (NORD) enthusiastic support in recommending this groundbreaking product. 

Shop & Support IAES Through PayPal’s 

#GiveATCheckOut

Have you wanted to support IAES, Autoimmune Encephalitis awareness, and the AE Warrior that you love?

Here is an easy and affordable way to donate without feeling a thing when shopping with your Paypal account. Each time you check out you will be reminded of an opportunity to give $1 to IAES.

Simply go to your PayPal account and select “set favorite charity”, and choose International Autoimmune Encephalitis Society.  When you make a purchase and check out, an option comes up that asks if you would like to give $1 to IAES? 

Help create the positive change you envision for the AE Community by donating your change.

International Autoimmune Encephalitis Society is proud to be a platinum level participant on the Guide Star exchange, demonstrating or commitment to financial transparency.  IAES is a charitable non-profit 501 (c)(3) organization. Tax ID#81-3752344

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.

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