Select Page
theherd - THE HERD October 2023 2nd edition

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

Supportive assistance guide for your AE Journey~

October 2nd 2023 Edition

In this Issue~

  •  *Children’s Corner (for all ages): 37 Halloween Word Search Puzzles
  • *ABI Rehabilitation: Roll a Halloween Story
  • *Helpful Tips for the AE Warrior:  AE Trivia Playing Cards
  • *Most Popular Visuals: Halloween Group Therapy, Autoimmune Encephalitis Halloween
  • *Featured AE Article: Multidisciplinary team saves teen from hallucinations with astute diagnosis
  • *Podcast: Seronegative Autoimmune Encephalitis: clinical characteristics and factors associated with outcomes
  • *Clinician’s Corner: Understanding Clinical Trials for Autoimmune Encephalitis Webinar
  • *Open Access: Olfactory dysfunction after Autoimmune Encephalitis depending on the antibody type and limbic MRI pathologies
  • *Monthly Zoom Support Groups for Patients & Caregivers: Caregiver Monthly Zoom Support Group, #AETuesdayTries for patients and caregivers  
  • *AE Studies & Clinical Trial: What is a Clinical Trial Video, Cielo Clinical Trial to Compare Satralizumab with placebo in anti-NMDAr and LGI1 patients, The IGNITE Study, The ExTINGUISH Trial 
  • *AE Trivia Cards:  The Single Most Important Educational/Rehabilitation Tool for AE 
  • *AE Warrior Store:  Shop for AE Bling and Raise Awareness. Check out our new arrivals
  • *Shop & Support IAES: Sign up for PayPal’s #GiveAtCheckOut

Children’s Corner

Pediatric AE_FB

37 Halloween Word Search Puzzles

halloween

Enjoy this fun-filled collection of 37 Halloween-themed word search puzzles. Word Search puzzles are a wonderful exercise to do for brain injury rehabilitation from Autoimmune Encephalitis. Re-learn and re-train your brain by developing problem-solving, attention span, organizational and analytical skills.

ABI Rehabilitation From AE

shutterstock_407634274_train your brain

Roll a Halloween Story

Roll A Halloween Story-FB

Here’s a game to get you in the Halloween spirit and work on cognitive rehabilitation from brain injury due to AE. Roll the dice 3 times. Every time you roll, a different element of your story is revealed. Once you have finished rolling the dice, write or tell your story. Work on your: organizational skills, memory, cognitive, reasoning, and decision-making skills.

Helpful Tips for Patients & Families

Helpful tips_memory loss blog_1-8-2020

AE Trivia Playing Cards

Trivia card_ad_1_FB
Have fun learning about AE while you re-learn and re-train your brain with AE Trivia Playing cards. IAES has created this deck of cards specifically for you and your family to make your AE journey an easier one to bear. The deck answers the 52 most common questions about AE and doubles as a rehabilitation tool. Hailed by AE experts and therapists alike as ‘Brilliant’. Become empowered by increasing  your knowledge about AE so you can enhance your ability to advocate for yourself.

Most Popular Visuals

Halloween Group Therapy

brain injury

Autoimmune Encephalitis Halloween

AE Halloween-FB-2

Featured AE Article

Featured Articles-FB

Multidisciplinary team saves teen from hallucinations with astute diagnosis

“I was going to get out of the never-ending hell of being a prisoner to my own mind.” – Abigail Aguilar

Through a multidisciplinary approach to her case, experts at Loma Linda University Health diagnosed Aguilar with anti-NMDA receptor encephalitis, a neurologic disease caused by the body’s production of antibodies that attack a receptor in the brain causing inflammation. She was gifted a normal future by those who extinguished the fire in her brain.

Podcast

podcast_listen

Seronegative autoimmune encephalitis: clinical characteristics and factors associated with outcomes

In this episode we chat with Soon-Tae Lee, author of the article entitled: Seronegative autoimmune encephalitis: clinical characteristics and factors associated with outcomes. 

Clinician’s Corner

image 20 - THE HERD October 2023 2nd edition
clinical trials-AE-Webinar-FB

Understanding Clinical Trials for Autoimmune Encephalitis

IAES will be hosting a webinar on Clinical Trials that is free and open to the public on November 16th. We went to the best AE expert on the topic, Dr. Jeffrey Gelfand, who enthusiastically accepted our invitation.

Everyone here has a stake in this. If we are to find a cure for AE as an end goal, we MUST have better treatments that are FDA-approved for Autoimmune Encephalitis (approved treatments worldwide) so patients are never denied treatment or experience treatment delays. A great deal of advocacy and understanding of AE had to take place to reach this point. This is HUGE! There are alternative treatments other than Rituxan that can help patients who don’t respond as we hope or can be more effective. There are also 3rd line treatments with extreme promise, but we need to run Clinical Trials to get them to all AE patients for better outcomes.

All of us need to understand how clinical trials are run and share that information with any AE patient we meet. Dr. Gelfand focuses on clinical trials for AE, has been a key researcher on the topic, and has moved the ball forward for all AE patients through his contributions.

Clinical trials provide free AE treatment, experts oversee your case and the health and best outcome of the patient is not compromised if you get a placebo. AE patients get the opportunity to receive a highly promising treatment and our forever thanks for helping all patients (present and future), have better outcomes.

The webinar will be recorded. 

Open Access

open access

Olfactory dysfunction after autoimmune encephalitis depending on the antibody type and limbic MRI pathologies

Conclusions: 

The results of this study indicate that patients with NMDAR autoimmune encephalitis have normal long-term olfactory function. However, patients with non-NMDAR autoimmune encephalitis appear to have a persistently impaired olfactory function, probably mediated by encephalitic damage to limbic structures. 

Monthly Zoom Support Groups For Patients and Caregivers

 

 

 

Caregiver Monthly Zoom Support Group

autoimmune encephalitis

The next monthly meeting will take place on November 9th 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.

#AETuesdayTries

The next monthly #AETuesdayTries Zoom meet-up will take place on October 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.

AE Studies and Clinical Trials

What Is A Clinical Trial (5-Minutes)

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

Cielo clinical trial-Roche-FB
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.

The ExTINGUISH Trial

autoimmune encephalitis

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

autoimmune encephalitis
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

trivia_fb

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. 

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.

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.

shop with Paypal-Facebook Post
baC - THE HERD October 2023 2nd edition

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.

subscribe-THE HERD-fb
mission2 - THE HERD October 2023 2nd edition
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.

guidestar-platinum-logo-300x300
International Autoimmune Encephalitis Society (IAES) is a Family/Patient centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. 

 

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.

nord-membership-2023_PLAT
Tabitha Orth
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.
image 23 - THE HERD October 2023 2nd edition

Our website is not a substitute for independent professional medical advice. Nothing contained on our website is intended to be used as medical advice. No content is intended to be used to diagnose, treat, cure or prevent any disease, nor should it be used for therapeutic purposes or as a substitute for your own health professional's advice. Although THE INTERNATIONAL AUTOIMMUNE ENCEPHALITIS SOCIETY  provides a great deal of information about AUTOIMMUNE ENCEPHALITIS, all content is provided for informational purposes only. The International Autoimmune Encephalitis Society  cannot provide medical advice.


International Autoimmune Encephalitis Society is a charitable non-profit 501(c)(3) organization founded in 2016 by Tabitha Andrews Orth, Gene Desotell and Anji Hogan-Fesler. Tax ID# 81-3752344. Donations raised directly supports research, patients, families and caregivers impacted by autoimmune encephalitis and to educating healthcare communities around the world. Financial statement will be made available upon request.

Translate »