As all of us who have been affected by AE know, the holidays can be filled with mixed emotions. Some of us are just settling into our role as caregiver, some are seasoned in giving of ourselves in support of someone with AE, and some of us long for the time when we were comforting a …
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.
AE Alliance partnering with strategic development consulting firm
As we look to expand our outreach, the AE Alliance is excited to announce we have retained the strategic development consulting firm moss+ross. Our goal is for moss+ross to guide us through developing a more comprehensive business plan, and provide insight into funding strategies to implement new organizational strategic goals. moss+ross provides fundraising and planning …
Ex-president of Facebook donates $10M to autoimmune research
BuzzFeed News reporter, Stephanie M. Lee, talked to the ex-Facebook president and Napster co-founder, who’s passionate about combating immunological diseases, about his gift to the University of California, San Francisco. BuzzFeed story on $10M gift for autoimmune research
Fellow Survivors Gather at Florence Forth
I am not a runner. I cringe at the thought of running. So naturally, when Susannah Cahalan told me about the Florence Forth Road Race in Durham NC, I was a bit skeptical. However, when she added that there would be fellow survivors of autoimmune encephalitis attending, I made my decision to go. There were …
“We are Survivors”
We are all survivors of autoimmune encephalitis. Patients, families, friends, caretakers, doctors, nurses, rehabilitation specialists, we have all endured the worst this disease can throw at us. And we are surviving. This weekend I had the chance to meet four amazing survivors. Each has their own story to tell. They shared the same stage: a six-year-old …
AE Clinicians Network: a new resource
After my daughter became sick at the age of two-and-a-half, my husband and I began a quest to find a doctor who could identify what was ailing her and treat her. Six years and 20 doctors in four states later, we were told she had autoimmune encephalitis (AE). The AE Alliance wants to make stories …
International Symposium on Autoimmune Encephalitis
Today, we’re thrilled to release the official report from the First Annual International Symposium on Autoimmune Encephalitis held March 27-28, 2014 in Durham, N.C. The symposium was funded with the proceeds from the 2014 Florence Forth Road Race! The primary goal of the symposium was to establish a collaborative medical community to develop a consensus …
Dallas Cowboy Amobi Okoye recovers from NMDA receptor encephalitis
Dallas Cowboy defensive tackle Amobi Okoye has recovered from NMDA receptor encephalitis and is preparing for a return to the NFL this fall. I had to read the story by The Dallas Morning News’ Rainer Sabin twice. Okoye is the first professional athlete to have autoimmune encephalitis and the first to attempt to return to professional sports. …
Susannah Cahalan and Dr. Najjar discuss AE
Susannah Cahalan and Dr. Souhel Najjar NY Times best selling author and AE survivor Susannah Cahalan reads from Brain on Fire and has a conversation with the doctor who saved her life, Dr. Souhel Najjar. The Autoimmune Encephalitis Alliance hosted a series of Autoimmune Encephalitis awareness events at Duke University Medical Center, March 26 and 27, 2014. International experts …
Grand Rounds
Duke University Medical Center Grand Rounds Department of Psychiatry and Behavioral Sciences and the Department of Pediatrics, January 24, 2013 Host Dr. Helen Egger, Chief, Division of Child and Family Mental Health and Developmental Neuroscience, Department of Psychiatry and Behavioral Sciences, Duke University Medical Center Presenters Susannah Cahalan, author of Brain on Fire: My …