AEA

My New Normal: Reflections & Advice on Life After Autoimmune Encephalitis 20+yrs later January 1, 2018

“She probably has a month left before she is in a persistent vegetative state or dies.” These are not words that you or your loved ones want to hear any time, but especially when you are only 25. Friends came to say goodbyes and the outlook was bleak. Just six months prior (during the Summer […]

AEA executive director speaks at University of Texas Medical Branch January 9, 2018

Autoimmune encephalitis was featured at a November 21, meeting of the Osler Club sponsored by the John P. McGovern Academy of Oslerian Medicine at the University of Texas Medical Branch’s  (UTMB). Following a sit-down dinner, the 48 attendees, many of whom were physicians and physicians in training, filled the room to capacity for the program […]

AEA represented at UK-based Encephalitis Society Conference January 23, 2018

Researchers and clinical professionals interested in the study of encephalitis descended on London on Monday, December 4, for the UK-based Encephalitis Society annual conference . More than 120 people from the UK, USA, Denmark the Netherlands and Indonesia joined for a day of presentations and networking on topics surrounding encephalitis. The conference ended with the […]

Join your AE Community on March 3rd! February 8, 2018

Come join your AE community at the annual Florence Forth Road Race and AE Family Lunch on March 3, 2018 in Durham, NC. It’s a chance for AE survivors to join together and share stories.  The center piece of the weekend is a walk/run on Saturday morning called Florence Forth. Then after the walk/run is […]

AE Alliance Appoints Interim Executive Director February 15, 2018

The Autoimmune Encephalitis Alliance is delighted to announce the hiring of Elisabeth Wharton as Interim Executive Director where she will focus on the creation and implementation of policies and procedures essential to the next steps we hope to take as an organization. “The Autoimmune Encephalitis Alliance already has a foundation of relationships with key entities […]

May is AEA Research Network Month: What is it? May 2, 2022

AEA Research Network Month is when the AE Alliance focuses on research funding, collaborations and AE research awareness. What’s our goal? Raise funds for the 2023 Seed Grant Program. Provide you, the AEA Community a strong understanding of the huge importance of research and AE. What can you expect during May 2022? A better understanding […]

Why Research Network Month? A Conversation with Caterri Woodrum & Meg Poe May 4, 2022

The Research Network launched in May, 2020 and resulted in the first AEA Community Seed Grant Program in 2021. This program supports research focused on the diagnosis, management, and outcomes of individuals with AE. The program is funded by members, friends and supporters of the AE Alliance Community. Would you like to know the answers […]

Develop an Attitude of Gratitude this December with the AE Alliance November 9, 2022

Whether you are living with AE, are a caregiver, family member, friend, physician, researcher, Board Member, MAB Member, program partner or sponsor or this is your first time ever to the Autoimmune Encephalitis website, we are excited you are here and ready to develop an attitude of gratitude! This program is inspired by a year […]

From VGKC to LGI1 and Caspr2 encephalitis: The evolution of a disease entity over time April 18, 2017

Science Direct has published an article by authors van Sonderen, M.W.J. Schreurs , P.W. Wirtz , P.A.E. Sillevis Smitt, and M.J. Titulaer that a wide variety of clinical syndromes has been associated with antibodies to voltage-gated potassium channels (VGKCs). Six years ago, it was discovered that patients do not truly have antibodies to potassium channels, but […]

Caroline shares her story of surviving autoimmune encephalitis October 20, 2016

“I was given the gift of survival, and the gift of having a voice to shed light on this little known disease.” From guest blogger, Caroline, who contacted AEA. We asked her to share her story. We hope her experience will spur on others in their own fight with AE. It’s safe to say 2015 was not […]