Blog

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 […]

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 […]

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 […]

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 […]

“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, […]

Giving Tuesday, celebrated on the Tuesday following Thanksgiving (in the US), is a global giving movement in it’s sixth year. In response to  shopping events Black Friday and Cyber Monday, #GivingTuesday kicks off the charitable season, when many focus on their holiday and end-of-year giving. We are always so touched at AEA by the generous spirit […]

One of the first studies on long-term neurobehavioral outcomes in patients affected by AE will be presented by Anusha Yeshokumar, MD, during the upcoming Encephalitis Society meeting in London. This may be difficult news for some AE patients, however at times it is comforting to know that what one suffers is not unusual. The study found that […]

The inaugural Lukapalooza Costume Bash to benefit the AE Alliance was a great success and is in the books! Luke Shriver, an AE survivor, and his family and friends had an amazing time while sharing awareness and raising funds for the AE Alliance.  The spirit of community, courage, and the love of good music brought a […]

Pioneer in the field of autoimmune encephalitis, Josep Dalmau was recently honored with the prestigious Rey Jaime I Award for medical research in a ceremony in Barcelona, Spain. His group’s achievements are in the area of autoimmune disorders that affect the brain, including the recognition of several new syndromes in autoimmune encephalitis. They are credited […]

Rory Halbert was recognized at a University of Indianapolis women’s soccer game recently as part of TeamIMPACT, a program which allows children with serious illnesses to become an honorary member of a college team. Rory was recognized at halftime, as she is graduating from the program. The team wore green to show support for Rory’s […]