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 makes us “wiser, wearier and stronger”

I recently read an article about myself in the New York Times—well it wasn’t my name or my child but it was my story. Sandra Joy Stein wrote the article titled “Becoming the Parent With the Child in the Wheelchair.” I don’t know Ms. Stein personally, but I know her life. I had a young …

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AE Alliance Awards First Grant

The Autoimmune Encephalitis Alliance awarded its first grant to the Autoimmune Brain Disease Program at Duke University Children’s Hospital.  Co-directors of the Program, Dr. William Gallentine, Pediatric Neurology and Dr. Heather van Mater, Pediactric Rhuematology, accepted the grant and will use the funding to advance their ground-breaking, multidisciplinary clinic and related research.  The $11,000 grant …

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NC Premiere of Across the Starting Line

On July 11, 2013, the Autoimmune Encephalitis Alliance hosted the NC Premiere of Across the Starting Line, a Short Film, and Book Reading by Susannah Cahalan, Author of Brain on Fire. The event was held in Durham, NC at the Full Frame Theater at American Tobacco Campus, a boutique theater built in collaboration with Duke …

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Florence Forth

Our family has always been a running family. A jogging stroller lived on our porch or dining room for years. We ran when full time jobs became stressful, while Laura and Florence napped as babies, and just exercising our dog. When Florence fell ill with an unknown disease at age two, we increased our running …

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One is Too Many

When I talk about autoimmune encephalitis, I often get the question “How many people have autoimmune encephalitis?” My answer, “We don’t know.” The first few times I was asked these questions, I was apologetic for not having an answer.  I would answer, “This disease is so new the doctors haven’t yet compiled the statistics.” Or …

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Disseminating Knowledge

One core mission of the Autoimmune Encephalitis Alliance is to share the latest research to improve the clinical diagnosis and treatment of AE.  A list of symptoms and a brief discussion of diagnosis are provided in the Living with AE section of this website. In January 2013, the AE Alliance coordinated a Grand Rounds at Duke University Medical Center. Our board members …

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