AE Alliance Blog

The AE Alliance blog endeavors to educate, inspire hope and build a community among patients, families and caregivers. This blog is written for families, patients, caregivers and anyone interested in learning more about autoimmune encephalitis.

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

Make a difference in the lives of children and adults with autoimmune encephalitis today – #GivingTuesday and Amazon Smile

Make a difference in the lives of children and adults who are suffering from this rare form of brain inflammation. #GivingTuesday is today! Black Friday and Cyber Monday have passed so now please take the time to give to others in need. Your gift to the Autoimmune Encephalitis Alliance is used to help patients find …

Read more

“Giving Tuesday” celebrated around the world on November 28

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 …

Read more

Long-term neurobehavioral outcomes in Autoimmune Encephalitis

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 …

Read more

Lukapalooza Costume Bash to Benefit AEA

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 …

Read more