Autoimmune Encephalitis

Leah Ehle’s autoimmune encephalitis survival story December 19, 2017

My name is Leah Ehle. I am married and have two Pugs.  I live in Connecticut and work as a Nurse Practitioner in the field of gastroenterology.  I have worked in the medical field for over 10 years, first in oncology and then after my masters I went into gastroenterology. I have always prided myself […]

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 […]

Research Opportunity: Living with LGI1? Share Your Experience February 11, 2022

NO LONGER ENROLLING If you are diagnosed with LGI1 autoimmune encephalitis (LGI1) or are the caregiver of someone with LGI1, you may qualify to participate in this study conducted by Fulcrum Research Group. The goal of the study is to better understand the patient experience with LGI1 autoimmune encephalitis for the purpose of supporting potential […]

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 […]

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 […]

Incidence of AE estimated by Mayo study February 2, 2018

Autoimmune encephalitis experts at the Mayo Clinic published the first population-based study of AE in an effort to determine the incidence of the disease. The researchers found that in the last decade approximately 1 in every 100,000 people develop AE each year. This translates into approximately 4,000 new AE cases in the US annually and […]

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 […]

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 […]

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 […]

Music, memory, and neurorehabilitation December 27, 2017

For many AE patients and family members, time seems to stand still during the long hours spent in the hospital, infusion centers, traveling, or even at home while recovering. This might be eased by the simple pleasure of listening to music. While classical or jazz may be pleasant to one patient, it might not be for […]