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About Us

The International Autoimmune Encephalitis Society, (IAES), is the only Family/Patient-centered organization for people with a diagnosis of Autoimmune Encephalitis. The services we provide are all-inclusive from getting a diagnosis to recovery and the many challenges experienced on that journey. 

If you are like most patients or concerned loved ones, you have searched the internet in pursuit of information about autoimmune encephalitis and have come across blogs and opinions. How do you know you can trust these resources? IAES provides science-based information backed by trusted medical experts in the field of autoimmune neurology and relies on the expertise of our Medical Advisory Board. We are an established non-profit organization with a history of supporting Autoimmune Encephalitis Warriors, (patients,caregivers and families), through their journey from diagnosis to recovery. 

Welcome to our ‘AE Family’, the family you never knew you had.

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Our Motto

“Empowering victims of Autoimmune Encephalitis and their caregivers through Support and Education”.

Driven by the knowledge that “Education is Power”, IAES has created, in collaboration with Dr. Josep Dalmau, AE Trivia Playing Cards. The first AE product in the world, AE Trivia addresses the educational and rehabilitation needs for the AE community and comes highly recommended by top experts in the field.

We recognized the need to help people understand the disease so they can feel in more control of their health situation and have increased confidence in partnering with their treating physician and care team. We believe that knowledge is the most valuable asset an individual with this disease or caregiver can possess. The power of education leads to strong self-advocacy which in turn leads to better care and outcomes.

Our Mission Statement

Leading with integrity, the International Autoimmune Encephalitis Society strives to advance services, education, increase awareness and advance research for this group of diseases.  The services we provide are all-inclusive from getting a timely diagnosis to recovery and the many challenges experienced in that journey.   

Raising awareness of Autoimmune Encephalitis across the many specialties of medicine that come in contact with these disorders and the public to ensure a timely and accurate diagnosis and aggressive treatment plan for best outcomes. Advancing research to find a cure. 

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Through increased awareness and education, IAES has successfully changed the face of the AE community with our gold standard model. IAES established the month of February as AE Awareness Month in 2000, when increased awareness is celebrated and medical experts join us for our acclaimed Speaker Series.  Our services begin with assistance in receiving an accurate diagnosis by an expert in autoimmune neurology who can successful orchestrate a complex treatment regimen throughout the course of the patient’s illness. IAES connects patients to doctors and doctors to doctors to confer on cases for the best outcome possible. We remove travel and accommodation financial burdens by connecting patients with free flights/discounted accommodations to medical experts on our Doctor’s list located near major medical facilities in the U.S.A. and parts of Australia.

Autoimmune Encephalitis Warriors, a term we have given to patients, caregivers and families, appropriately describes the burden of fighting the disease and the road blocks encountered on that journey. Additionally, IAES leads the community by conducting the only science-based educational support group for patients, caregivers and families and holds  monthly zoom meetings for patients focusing on resilience as well as a monthly zoom meeting specifically designed for caregivers.    Because AE is a complex topic, IAES has designed ‘AE Memes‘, a teaching tool that utilizes best practice strategies for learning by supporting the AE patient’s cognitive deficits while utilizing their strengths allowing for easy learning.  Understanding  this group of diseases, its treatments, what to expect on your AE journey, and rehabilitiation needs, those impacted feel more empowered in their ability to advocate, experience improved communication with their doctors and a sense of added control and improved confidence. 

Additionally, direction for case management, one on one advocacy in navigating crisis situations, financial advice to prevent bankruptcy, hospital overbilling, overturning treatment denials by insurance, psychiatric hold prevention, advice for Social Security Disability, and rehabilitation are provided.  

We offer a free patient resource guide, The First Aid Tool Kit, that provides the guidance required to navigate through your AE journey with ease by avoiding crisis situations patients are vulnerable of encountering. Free tools such as our AE medical I.D. card, AE Behavior/Symptoms card, Well-Being Warrior Journal and the development of the only educational product for AE created, AE Trivia playing cards have all been designed to safeguard you from unnecessary crisis thus ensuring your safety and success. Lastly, IAES manages the most comprehensive website on autoimmune encephalitis which doctors and patients rely on worldwide. We operate the only ‘Hot Line’ in the AE community which was established in 2016. 

Board of Directors

The Board of Directors is a group of committed volunteers. No board member receives compensation.

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President

Tabitha Orth
Beaverton, OR

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Vice President

Daria Muir
Aberdeenshire, UK

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Treasurer

Melody Wilson
Gardnerville, NV

Mari Wagner Davis - About Us

Secretary

Mari Wagner Davis
Chicago, Illinois

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Member at Large/Liason

Jeri Gore
Glenmoore, PA

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Member at Large/Liason

Ryan Henn-Hawthorne
Battle Creek, NE

Committed Volunteers

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Chief Resilience Officer

Tessa McKenzie
Life design Educator for the Social Sciences at Johns Hopkins
Sykesville, Maryland

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Editor-in-chief

Jeri Gore
Glenmoore, Pennsylvania

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Technical Director

Melody Wilson
Gardnerville, Nevada

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Support Services Coordinator

Mari Wagner Davis, RN, ACM
Accredited Nurse Case Manager
Chicago, Illinois

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Advocacy Coordinator

Alanna Yee
Alberta, Canada

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Legal Counsel

Brian W Donnely
Mount Laurel, NJ

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IAES Ambassador

Ryann Henn-Hawthorne
Battle Creek, Nebraska

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IAES Ambassador | Patient Advocate

Lokelani Montero 
Richmond, California

Medical Advisory Board

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Dr. Daria Muir

Medical Advisor & Liaison 
Aberdeenshire, UK

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Dr. Alexander Rae-Grant

Neuroimmunologist
Cleveland Clinic, Ohio

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Dr. Belinda Lennox

Professor of Psychiatry
University of Oxford

Expert autoimmune encephalitis

Dr. Eoin P. Flanagan, M.B., B.Ch.

Neurologist
Mayo Clinic, Rochester, MN

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Dr. Justin Abbatemarco

Neurologist
Cleveland Clinic, Ohio

Marianna Spatola MD PhD - About Us

Dr. Marianna Spatola

Neurologist, Neuroimmunologist

IDIBAPS August Pi i Sunyer Biomedical Research Institute

Barcelona, Spain

Dr Mastura Monif Victoria Australia - About Us

Dr. Mastura Monif

Neurologist
Monash University,

Victoria Australia

SERGIO MUNIZ CASTRILLO MD PHD - About Us

Dr. Sergio Muñiz-Castrillo

Neurologist

Stanford University       CA, U.S.A.

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Dr. Michael Sweeney

Neurologist
Louisville, KY

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Dr. Veronica Cipriani

Assistant Professor of Neurology
University of Chicago

The medical information on the International Autoimmune Encephalitis Society, Inc.  website is provided as informational and educational resources only and in no way should be taken to be the provision or practice of medical, nursing or professional health care advice or services.  The information should not be considered complete or exhaustive and should not be used in place of a visit, call, consultation or advice of your physician or another healthcare provider.  All content, including text, graphics, images, videos, podcasts, slideshows, any information, contained on or available through this website, is for general information purposes only.  The information on this website is not to be used, implied, or relied upon as a substitute for professional medical advice, diagnosis or treatment for Autoimmune encephalitis or any medical disorder.

​You are encouraged to confirm any information obtained from or through this web site with other sources, and review all information regarding any medical condition or treatment with your physician.  NEVER DISREGARD PROFESSIONAL MEDICAL ADVICE OR DELAY SEEKING MEDICAL TREATMENT BECAUSE OF SOMETHING YOU HAVE READ ON OR ACCESSED THROUGH THIS WEB SITE.

                                                                                              Any referral to physicians is provided as a courtesy only

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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