Category: News

CNN’s sister network HLN to air show on autoimmune encephalitis on August 27, 2017 at 9 p.m. EST

HLN will air an episode on autoimmune encephalitis as part of their series “Something’s Killing Me,” on August 27, 9 p.m. EST. The show will feature the experiences of Susannah Cahalan, Emily Gavigan, and Madison Jensen. We are pleased that AEA had the privilege of helping CNN answer questions about the disease and make introductions …

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Steady progress: Review article on autoimmune encephalitis and how field is evolving

As difficult as diagnosis and treatment are for autoimmune encephalitis, fortunately for the community of patients, families, and caregivers, rapid progress has been made within only a decade. A group of physicians in Oxford, England has published a review for the journal Neuropharmacology that summarizes the various types of AE, including a classification of syndromes, …

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A Case of Anti-LGI1 Encephalitis

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 …

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A daughter remembers her mom to help others with AE

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 …

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Autoimmune encephalitis community loses an amazing doctor far too soon

A very heavy heart, shock, and sadness met our hearing of the news that  Dr. Jessica Panzer passed away after a short, courageous battle with non-smokers lung cancer. She received M.D. and Ph.D. degrees from the University of Pennsylvania in 2006. She continued on at the University of Pennsylvania and the Children’s Hospital of Philadelphia as …

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Recovering anti-NMDAR patient shares advice via voice memo

Shawn Kregan contacted the Autoimmune Encephalitis Alliance in August of 2016, and we have been connecting regularly ever since. He has put together a voice memo to aid and inspire those who struggle with AE.  Shawn wants everyone to know that sharing experiences gives others confidence and strength, so don’t be afraid to tell people …

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Join 1600 others for Florence Forth Race and Family Lunch on March 4, 2017

You don’t have to be a runner or walker to support those affected by autoimmune encephalitis on March 4, 2017, but if you are, come share your spirit, laughter, and competitive spirit with 1600 soon-to-be friends at Florence Forth. There is also a wonderful Family Lunch for patients and their immediate families at noon (doors …

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Rare Disease Day is Feb. 28

The AE Alliance is proud to participate in Rare Disease Day, launched by EURORDIS and its Council of National Alliances, on February 28. We appreciate the Mesothelioma Cancer Alliance and the National Organization for Rare Diseases bringing us into this day of recognition. This year’s slogan is “With research, possibilities are limitless.” While each participating organization …

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Things siblings of children with special needs struggle with – from The Washington Post

Jamie David Smith has written a terrific article on the struggles of siblings of special needs children. Smith speaks to Rachel Feichter whose daughter, Talia, has autoimmune encephalitis. “Documentary filmmaker Rachel Feichter has a typically developing 11-year-old and a 7-year-old, Talia, who has special needs as a result of a neurological autoimmune disease, Hashimoto’s encephalitis. …

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