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.

Bortezomib Treatment for Anti-NMDAR Autoimmune Encephalitis

The Journal of the American Medical Association Nuerology reports the following by authors Volker Behrendt, MD1; Christos Krogias, MD1; Anke Reinacher-Schick, MD2; Ralf Gold, MD1; and Ingo Kleiter, MD1: Anti-NMDAR  autoimmune encephalitis, associated with ovarian teratoma, predominantly affects young females.1 Because antibodies against subunits of the NMDAR contribute to the pathogenesis, methods targeting humoral immunity are therapeutically efficacious.2 However, some patients have an unsatisfactory outcome after high-dose corticosteroids, apheresis …

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Whittington family continues sharing autoimmune encephalitis story 6 years on

Ellen Whittington was 12 years-old when she was first diagnosed with autoimmune encephalitis in 2012. At that time, she couldn’t talk or feed herself. Now, 17 year-old Ellen is a high school student and doing much better. Her family was interviewed by local NBC affiliate WRAL, as an update to their original story. Ellen and her family were …

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March 22, is “Brain Injury Awareness Day”

March 22, of each year is Brain Injury Awareness Day. This year’s theme is “Not Alone.” While autoimmune encephalitis is not what most people consider a “brain injury,” the damage done by the disease can be similar. “I have been told by several world-class physicians who focus on AE, that recovery, and in particular the …

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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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Wall Street Journal reports sharing group health stories allows for insight for doctors

Rachel Emma Silverman from the Wall Street Journal reports that health care providers who organize patient discussion groups are finding that vast amounts of information are to be gained. They are asking patients with similar conditions to share stories. The idea behind these “experience groups” is to elicit insights about illnesses, with the goal of understanding and …

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Lancet Neurology publishes paper on brain imaging and diagnosis of autoimmune encephalitis

It is often difficult to clinically diagnosis autoimmune encephalitis because patients’ symptoms can be so widely varied. In the Sept. 2016, issue of The Lancet Neurology, Francesc Graus and colleagues proposed an initial diagnostic work-up relying on conventional neurological evaluation and standard diagnostic tests such as MRI, CSF sampling, and EEG. This approach would enable clinicians to make …

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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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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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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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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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