Tag: Autoimmune Encephalitis

World Encephalitis Day 2/22

World Encephalitis Day (“WED”) is celebrated every February 22 – just remember 222.  While we at the Autoimmune Encephalitis Alliance focus on autoimmune encephalitis, we are so happy to join in supporting all of those affecting by any form of encephalitis. To show your support for those with encephalitis of all types, wear the color red …

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New treatment for anti-NMDAR autoimmune encephalitis reports Charité – Universitätsmedizin Berlin

One of the one of the largest university hospitals in Europe, Charite’, recorded significant progress in treating anti-NMDAR, including in patients who did not previously respond to treatment. Anti-NMDA receptor encephalitis is an inflammatory disease that affects the central nervous system. It is a rare autoimmune disease that results in the body producing antibodies against …

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Largest fundraiser for AEA, “Florence Forth,” coming up on March 4

          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 …

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Autoimmune Encephalitis Alliance and Option Care co-sponsoring Mayo Clinic Trial on IVIg

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 …

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Autoimmune Encephalitis: the Oldest Survivor?

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 …

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Your gift is worth double thanks to match by Bob and Suzi Given

Suzi and Bob Given have contributed $25,000 to establish a matching campaign for the Autoimmune Encephalitis Alliance. This means donations we receive will be matched 1:1 up to $25K, by the Given’s gift. Bob is recovering from autoimmune encephalitis and states, “I directly benefited from the work being done by AEA, as have so many others. This donation …

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Autoimmune Encephalitis Alliance co-sponsors pediatric AE treatment consensus meeting

The Autoimmune Encephalitis Alliance, along with Children’s National Health System, and the Childhood Arthritis and Rheumatology Research Alliance, co-sponsored the first International Pediatric Autoimmune Encephalitis Treatment Consensus Meeting at the Carnegie Endowment for International Peace in Washington, DC, on November 14. “The AE Alliance was honored to help bring many of the world’s leading experts …

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Giving Tuesday and Amazon Smile

Giving Tuesday and Amazon Smile are two ways to support those suffering from AE. The first Tuesday in December has become a world-wide call for people to celebrate the art of giving; a joining of communities to “give rather than receive.”  Please visit donate to AE Alliance to support those in need and share your giving …

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Fun way to explain anti-NMDAR autoimmune encephalitis to kids…and adults

It is rare to find humor in autoimmune encephalitis but James Radke and Levent Efe created a story on anti-NMDAR that is accessible to kids and adults alike. Think of it as a guide to anti-NMDAR for dummies. This creative look at “Cleo” and “Irene” the neurons, and  “Shelia” who has anti-NMDAR on her membrane is …

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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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