Tag: AEA

AE Alliance Appoints Interim Executive Director

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 …

Read more

Join your AE Community on March 3rd!

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 …

Read more

AEA represented at UK-based Encephalitis Society Conference

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 …

Read more

AEA executive director speaks at University of Texas Medical Branch

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 …

Read more

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

“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 …

Read more

Music, memory, and neurorehabilitation

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 …

Read more

Leah Ehle’s autoimmune encephalitis survival story

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 …

Read more

Happy 5th birthday to Autoimmune Encephalitis Alliance

The AE Alliance turned five years old yesterday!  Five years ago on Dec. 17, two families that had kids with AE came together in hopes that they could start something to help others suffering from this little-understood disease.  The vision was to not only disseminate information to help patients but also to give support to …

Read more

Diagnosis of AE on clinical basis confirmed by pediatric study

Experts in the field of AE came together in 2016 to establish a set of clinical diagnostic criteria to be used early in the course of disease (Graus et al). This was developed so that patients might be diagnosed with suspected AE and treated promptly, while still awaiting test results or in areas where antibody …

Read more

Amobi Okoye, NFL Defensive Tackle, shares a remarkable story of surviving AE

“I am a walking miracle.” These are the words of Amobi Okoye, who shared intimate details of his battle with anti-NMDA receptor encephalitis on ESPN’s Monday Night Countdown this week. Drafted by the Texans at only 19 years old, he played 6 seasons for Houston, then 2 for Chicago. He was the picture of health, …

Read more