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“You can’t diagnose something you have never heard of before” – a UK woman’s story of autoimmune encephalitis April 22, 2017

Smashing windows, self-harming, and shaving her own hair, Sarah Galloway had to be placed in mental hospital before doctors could determine her illness.  ChronicleLive reports on a 22 year-old woman who fell ill with autoimmune encephalitis as she was about to enter her final year of university. Click here to read the full story. We wish Sarah […]

From VGKC to LGI1 and Caspr2 encephalitis: The evolution of a disease entity over time April 18, 2017

Science Direct has published an article by authors van Sonderen, M.W.J. Schreurs , P.W. Wirtz , P.A.E. Sillevis Smitt, and M.J. Titulaer that a wide variety of clinical syndromes has been associated with antibodies to voltage-gated potassium channels (VGKCs). Six years ago, it was discovered that patients do not truly have antibodies to potassium channels, but […]

HESA helps promote encephalitis research with funding pledge to AE Alliance April 6, 2017

Two U.S. non-profits join forces to combat autoimmune encephalitis. “The AE Alliance is proud of the long-standing relationship with the Hashimoto’s Encephalopathy SREAT Alliance. We are grateful beyond words for HESA’s generosity. This collaboration allows both groups to look anew at imaginative ways to raise awareness on all autoimmune encephalitis fronts, fight this disease, and […]

Bortezomib Treatment for Anti-NMDAR Autoimmune Encephalitis March 28, 2017

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 […]

Whittington family continues sharing autoimmune encephalitis story 6 years on March 23, 2017

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 […]

March 22, is “Brain Injury Awareness Day” March 22, 2017

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 […]

Recovering anti-NMDAR patient shares advice via voice memo March 15, 2017

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 […]

Lancet Neurology publishes paper on brain imaging and diagnosis of autoimmune encephalitis March 9, 2017

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 […]

Join 1600 others for Florence Forth Race and Family Lunch on March 4, 2017 February 23, 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 […]

World Encephalitis Day 2/22 February 20, 2017

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 […]