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Every week I will share some new details on the 2020 AEA Family weekend because we are revamping this wonderful event! New in 2020 will be the location; the Museum of Life and Science in Durham, NC. This is a great location for everyone and every age and has so much to offer. Their outdoor space is most impressive. You […]
You are invited to join us from March 6 – 8, 2020 for the AEA Family Weekend in Durham, NC. Meet other families going through similar challenges. Share stories and learn about the latest treatments and discover strategies to make every day better. Meet with experts in the field of Autoimmune Encephalitis. There is plenty […]
When I was diagnosed with anti-NMDA receptor encephalitis in 2010, I didn’t understand what that meant – and not just because I had a brain disease. My symptoms, ranging from paranoia and mania to the inability to walk or use my hands, seizures, and no longer being able to read or follow conversations, varied so […]
AE Alliance is proud to be joining forces with The Anti-NMDA Receptor Encephalitis Foundation, Encephalitis 411, the Encephalitis Society, HESA, and Encephalitis Global in organizing the World Encephalitis Day 2020 Conference in Dallas, TX. The World Encephalitis Day 2020 Conference welcomes survivors and caregivers to attend and interact while celebrating World Encephalitis Day. We feel very fortunate to have […]
AE is often diagnosed by the detection of specific antibodies against different neuronal surface antigens in the cerebrospinal fluid (CSF), the blood or both. However, the antibody testing usually takes several days. A group at Ulm University in Germany reviewed the basic CSF findings of 1,305 patients with the 10 most important AE subtypes, for the […]
The American Academy of Child & Adolescent Psychiatry is holding its 66thAnnual Meeting, October 14-19 in Chicago, IL. On Wednesday, October 16, the focus will be on Autoimmune Brain Disorders. Autoimmune brain disorders are a spectrum of illnesses characterized by inflammation of the central nervous system (CNS). Child and adolescent psychiatrists must become familiar with […]
AE Alliance receives questions on a daily basis from patients and caregivers on diagnosis, treatment, recovery, and research. Sometimes these questions are very specific, but often they will apply to a lot of patients and caregivers. Starting in October, we will have a new segment in our newsletter: Ask the Panel. Your question will be […]
Early diagnosis of AE allows for aggressive treatment, which greatly improves recovery outcomes. On the contrary, delayed diagnosis and treatment can lead to permanent brain injury or even loss of life. In literature, no work has been published which compares clinical, radiological and laboratory characteristics of patients with definite autoantibody-positive AE (AE+) and autoantibody-negative AE (AE-). […]
Team Fledderjohn is fundraising and raising AE Awareness in honor of their son Alex, a bright young man who was diagnosed with Anti-NMDAR Autoimmune Encephalitis after being misdiagnosed for over 7 years. Please join them on August 17, 2019 in West Chester, Ohio for an AE Awareness gathering. They will have a neurologist and psychiatrist […]