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As we begin a new year we want to share a story with you. It is the story of a cute Colorado kid named Rama. We hope the detailed experiences of Rama and his family will offer personal insights that each of us can understand. The family moves from confusion to diagnosis to care to healing […]
As we are in the midst of the holiday season, what better way to celebrate than with a survivor’s story. We are grateful for Brittany’s willingness to write about her illness trusting that it might give some peace (especially this time of year) to the AEA community. MY DARK WINTER By: Brittany DiCapua They say that […]
The AE Alliance turns 3 years old today! Three years ago on this date, 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 […]
The Autoimmune Encephalitis Alliance is holding a strategic meeting on December 15. The board of directors and invited advisors are gathering in Durham, NC, with the goal of the thinking strategically regarding the organization. Based on this group’s recommendations, we expect to continue to set up structures that will empower the AE Alliance to increase […]
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 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 […]
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 […]
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 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. 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 […]