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.

Autoimmune Encephalitis Alliance represented at “Brain on Fire” movie premiere

The movie adaptation of Susannah Cahalan’s New York Times best-selling book, Brain of Fire, premiered at the Toronto International Film Festival on Friday, September 16. The red-carpet event included pre- and post-movie talks by Charlize Theron, who produced the movie, director Gerard Barrett, Chloe Grace Moretz, who plays Susannah, Dr. Najjar, who diagnosed the disease, and Susannah’s husband, Stephen …

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Role of 18F-FDG-PET imaging in the diagnosis of autoimmune encephalitis

The following is from The Lancet Neurology and is a response from Francesc Graus and Josep Dalmau first published in Sept. 2016. We thank Silvia Morbelli and colleagues for their comments on the role of brain 18fluorodeoxyglucose (18F-FDG) PET imaging in the management of autoimmune encephalitis. We agree about the potential use of 18F-FDG-PET in the diagnosis and evaluation …

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New pediatric center in Arizona targets autoimmune disorders

The following was reported by Stephanie Innes at the Arizona Daily Star. The opening of the new Children’s Postinfectious Autoimmune Encephalopathy Center in Tucson marks a new era of pediatric research for the University of Arizona, UA president Ann Weaver Hart said Tuesday during an opening event held at Banner-University Medical Center Tucson. The disorders hit …

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New paper on antibodies and autoimmune encephalitis

Abstract Reprinted from Health and Human Services Author Manuscript – Over the last 10 years the continual discovery of novel forms of encephalitis associated with antibodies to cell-surface or synaptic proteins has changed the paradigms for diagnosing and treating disorders that were previously unknown or mischaracterized. We review here the process of discovery, the symptoms, …

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AEA board member, Susannah Cahalan’s “Brain on Fire” to be shown at Toronto International Film Festival

One morning, 24-year-old Susannah Cahalan woke up in a hospital bed. She couldn’t speak. She couldn’t move. And she had no idea how she got there. The following is from the Toronto International Film Festival website. Based on Cahalan’s bestselling memoir Brain on Fire: My Month of Madness, director Gerard Barrett’s adaptation captures the horrifying …

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Autoimmune Encephalitis Alliance Hires Executive Director

(Durham, N.C.)—The Autoimmune Encephalitis Alliance, a 501(c)(3) non-profit organization, is pleased to announce John “Spencer” Spencer as its new executive director. “On behalf of the Board of Directors of the Autoimmune Encephalitis Alliance, I welcome Spencer as executive director,” said Board Chair Will McDow. “Spencer is already hard at work, moving the Alliance forward in …

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Paper examines frequency of herpes viruses in autoimmune encephalitis patients

In a new paper published in Neurology, an official journal of the American Academy of Neurology, Dr. Jenny J. Linnoila et al., “report the frequency of coexisting herpes viruses (herpes simplex virus 1 [HSV-1] or HSV-2, varicella zoster virus, Epstein-Barr virus [EBV], cytomegalovirus, or human herpes virus 6 [HHV-6]) andautoantibodies in patients with encephalitis (herpes or autoimmune) …

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