In her New York Times bestseller Brain on Fire: My Month of Madness, journalist Susannah Cahalan describes dreadful psychological experiences associated with her eventual diagnosis of autoimmune encephalitis. Compared with other forms of autoimmune disease and other types of encephalitis, knowledge about this particular diagnostic entity seems to be unfamiliar to most physicians; the medical […]
The following was sent to us by Erin Wicke Dankert to honor her mother Rita. “My family has been very open with my Mom’s experience in hopes of helping others with this condition.” AEA is so appreciative of this personal sharing by all who loved Rita. In March, my family suffered the devastating loss of […]
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 […]
Thank you EUROIMMUN for inviting the AE Alliance family to attend the EUROIMMUN Neuroimmunology Summit. All AE Alliance Clinicians and Support Network members are invited to attend this one-day virtual summit bringing together neurologic medical experts from across the United States. The topics to be discussed include: Updated guidelines for the diagnosis of neuroimmunology conditions […]
The Autoimmune Encephalitis Alliance and Option Care Enterprises, Inc. are co-sponsoring a clinical trial at Mayo Clinic to evaluate intravenous immunoglobulin (IVIG) treatment in patients with autoimmune epilepsy who fail to benefit from standard epilepsy medications. This study, the first of its kind, builds on Mayo Clinic research advances identifying new approaches to the diagnosis and treatment […]
The Journal of Neurology, Neuroscience, and Psychiatry reports on autoimmune encephalitis patients treated with immune based therapy including rituximab. Authors Dowland F, Swayne A, Bhuta S, et. al. discuss three cases and conclude, “The field of neuro-immunology has seen a plethora of newly discovered autoantibodies, yet there remain a significant number of patients, with features suggestive […]
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 […]
Dr. Matteo Gastaldi (C. Mondino National Institute of Neurology Foundation, IRCCS, in Pavia, Italy) was awarded a 2022 AEA Community Seed Grant to investigate the Cognitive teleRehabilitation in patients with Encephalitis of AutoIMmune etiology: CoRE-AIM study. Learn more about his research and how it will impact those affected with autoimmune encephalitis. The start date for the award is September 1, 2022. You […]
Did you know that our largest fundraiser is coming up on March 4, 2017, in Durham NC? That’s right, it is time for the 5th annual Florence Forth run/walk, and Family Lunch. Individuals and teams are welcome. The events in 2016 attracted almost 1500 runners/walkers, 300 volunteers, and 150 family members of those affected by […]
As research on autoimmune encephalitis has progressed over the past 10 years, pioneers in the field have often referred to it as a heterogeneous group of disorders. The commonality in various forms of AE is the underlying pathologic mechanism in a patient’s own immune system. For unknown reason the patient’s immune system has produced antibodies […]