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February 28, 2024 | by Tabitha Orth, IAES President and Founder

Thank you UCB for sponsoring all 2024 AE Awareness Month blogs.

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Some of you may be aware that IAES is completely powered by a volunteer staff. Volunteers are either caregivers or patients who have walked this walk and come out on the other side. After experiencing the trauma, they harbored a strong desire to create change so no one else would have to go through the experience without the help and support they so desperately needed. Some volunteer “AE Warriors” (a term I came up with in 2014 to denote the difference between an encephalitis ‘survivor’ versus an AE patient who has a long ongoing battle), are still receiving treatment themselves. Caregiver volunteers are also currently navigating the journey of their AE Warrior who is often still battling the disease. The quality of our volunteers, many of whom have medical backgrounds and their personal experience with AE, is the ‘secret sauce’ to IAES’ success. 

I began my patient advocacy in 2014, a year and a half after becoming ill in 2013.  Back then if you did a Google search for autoimmune encephalitis, nothing came up. I was able to find information on encephalitis, but nothing on AE. I did find a new organization whose mission was to build an alliance with doctors to further research. That was great to see. However, they only listed symptoms, tests, and a single paragraph defining AE which, while it was something, didn’t help me. It was an information desert.

My search for help led me to online forums. I found groups of people, largely undiagnosed, suffering, with no compass or light to guide them. These were dark days. I learned that before AE was identified in a 2007 paper by Dr. Josep Dalmau, patients were legally committed due to being misdiagnosed as a psychiatric case. They eventually perished.  “Frightening”, doesn’t begin to cover the situation we were in. The book Brain on Fire was on the New York Times best-seller list and catapulted awareness of this strange disease. As awareness ticked up slowly in the medical community, a great deal of misinformation accompanied it. There were only three locations in the U.S.A. with doctors familiar with this. They were: The Mayo Clinic, UPENN, and John Hopkins. That was it.

When people in need come to IAES, they may connect via our international telephone line, website inquiry, or one of our social media platforms. Everyone’s inquiry is handled with care for the best possible outcome for all. Many cases have an ongoing need. These are directed to different areas of IAES where a volunteer with the expertise required is assigned a case. IAES handles cases all over the world. Doctors regularly contact us via our website to learn about diagnosis and treatment and connect with experts who can confer on their cases. IAES is responsible for countless accurate diagnoses worldwide that would have gone misdiagnosed.

Members of our community have learned the value of self-advocacy. One of our goals in our mission is to help others become strong self-advocates. Daily personal attention is given to over 7,000 individuals on Facebook alone. The educational evidence-based private support group is the only one of its kind in the worldwide community. There, questions and advocacy advice are given based on what research reports and the talented administrators with specialized expertise on a variety of topics. Tools and techniques that support the patient’s deficits while utilizing their strengths are unique to IAES and the reason members can grasp complex information in a short period. Education is power and builds confidence. Feeling in control when facing a disease like AE is key.

When people contact us, it doesn’t dawn on them that they are speaking to someone who was once in the same situation their loved one is currently in. The hope and wonder of that realization immediately changes their perspective. AE can be reversed. The patient will improve. Hope is real. As strong as we volunteers are in our endeavor to create change and improve the lives of the people we serve, we struggle with our lasting deficits. All of us have cognitive impairments. Yet, what we have accomplished and how we manage it all daily, is something to witness.

Last week I reached out to members of the Board of Directors to ask if they could watch the awareness video for this year’s awareness month. How many AE Warriors did it take to find any typos or mistakes? It took five. I won’t complain about redoing the video 3 different times to make all the corrections. They were not caught in one go-round. That’s how it is behind the scenes. It takes 3-4 times longer to get a simple thing done. The important thing is that we get it done and reach our goal.  I thought you might like to be a fly on the wall and get a behind-the-scenes look into a typical daily phone call between staff members. 

Have you ever wondered what a telephone conversation between our President/Founder, Tabitha Orth, and another member of our Board of Directors is like? Two AE Warriors with memory issues and other cognitive deficits. Here’s a sample of a portion of a typical daily conversation with Board Secretary and Support Services Coordinator, Mari Wagner Davis with Tabitha. Mari’s time zone is two hours ahead of Tabitha’s. Both women return calls from the “Bat Phone”. Oh. The Bat Phone is IAES’ International Line. The name was coined by Tabitha’s husband Jim because when it rings Tabitha would jump up to answer it and he called after her, “Quick, It’s the bat phone!”.  When the bat phone rings, someone needs help, and it is usually crisis-driven.


A few minutes into a conversation:

Tab: OMG, brain glitch. Not braining well. Just woke up.

Mari: Have you had your coffee?

Tab: Nooo.

Mari: That’s okay. That’s okay. Take your time. Make your coffee.

Tab: Yes, and while I’m waiting for my brain to unfreeze, what do you think of the idea of that new program we were discussing starting as an…oh. What’s the word I want? It means ‘experimental’?

Mari: Investigational?

Tab: No.

Mari: Exploratory?

Tab: No, that is good, it’s close to the word I’m thinking of.

Mari: Trial?

Tab: Yes! Thank you! Trial. My coffee is done.

Mari: Oh, Good!

Tab: Does that sound good to you? Starting the program as a trial program and building out from there?

Mari: I agree. It does. I was calling to tell you about that phone call I handled yesterday. You know the friend of a mother back east?

Tab: Was that the one who needed to learn about available support services and a waiver for a Mom?

Mari: No, it was the ICU pediatric case. Waiver Mom Case is taken care of though.

Tab: Oh, good to hear. Well done. Got it. Yes, Pediatric ICU.

Mari: I helped them to arrange a consult with an expert. That happened. Spoke to Mom at length so I answered all her questions and she felt so much better. That one is all good and done.

Tab: Oh! Great. Perfect. I love it when things flow the way you train people to do things for us. I swear you have a gift for telling people exactly what to do and why, have them check back with you about their progress, and then they are pleased to death when you compliment them on the amazing job they have done. You have people jump through hoops and check in with you to ask, ‘How am I doing’? as they go. It cracks me up as much as I am grateful to work with you.

Mari: Thanks! It is hilarious. Are we meeting with those people about that clinical trial on Tuesday or Thursday?

Tab: I think Tuesday is the clinical trial and Thursday is the website guy. But we better check.

While I have you I wanted to update you on the Christmas Eve/Christmas Day Crisis Case. This coffee is so good, that my brain is clicking in. It had a happy ending but my gosh it was a bad one. Seizure disorder went off her meds and was having major seizures. An ambulance transported the patient to the ER. The seizures triggered psychosis and they were threatening to have her handcuffed by police and transported to a psych hospital because there was no room for her at the inn (hospital) on Christmas Eve. I’m not too fond of holidays, skeleton crews, and packed ERs. Holidays and health emergencies are a terrible combination.  It took a lot of work, more than it should have because of the holidays. She was admitted to neurology, and all is right with the world. I don’t know if that would have been the outcome if she hadn’t had a seizure right in the middle of the discussion with the attending. Lord, I was thankful for the timing of that seizure. Crazy to say you have an angel on your shoulder about getting a seizure when you need one, but that’s how it is sometimes. So, happy ending. No traumatic psych hold on Christmas. Geez.

Mari:  ERs and holidays are the worst. I’m glad it all worked out.  We are going to have a good year.

Tab: We are going to have a GREAT year! I’m excited.

Mari: So am I.

Tab: I know there was something else I needed to talk to you about, but I can’t think of it now.

Mari: That’s fine. You’ll think of it as soon as you get off the phone, so just call me back.

Tab: OK. I’ll be behind the scenes working on e-mail and the awareness video. I’ll keep an eye out for any messages.

Mari: Okay. I have a slew of requests to join the support group and will answer questions.

Tab: I saw how crazy busy your team was there.

Mari: We’ve connected with several of them, so that’s looking good. Amanda connected with several. But, yes very busy.

Tab: I’ll watch out for your welcome post, so I can say hi to everyone. See you online.

Mari: See you there. Bye.


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On June 16 th, 2022, Tabitha Orth, President and Founder of International Autoimmune Encephalitis Society officially became the 7,315 th “point of light”. Recognized for the volunteer work she and IAES has done to spark change and improve the world for those touched by Autoimmune Encephalitis. The award was founded by President George H.W. Bush in 1990.


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International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE.   Trivia Playing cards 3 FB 500x419 - Behind the Scenes For this interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store!  This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.   AE Warrior Store 300x200 - Behind the Scenes

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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.

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