Autoimmune Encephalitis Alliance

New pediatric center in Arizona targets autoimmune disorders September 23, 2016

The following was reported by Stephanie Innes at the Arizona Daily Star. The opening of the new Children’s Postinfectious Autoimmune Encephalopathy Center in Tucson marks a new era of pediatric research for the University of Arizona, UA president Ann Weaver Hart said Tuesday during an opening event held at Banner-University Medical Center Tucson. The disorders hit […]

New paper on antibodies and autoimmune encephalitis September 19, 2016

Abstract Reprinted from Health and Human Services Author Manuscript – Over the last 10 years the continual discovery of novel forms of encephalitis associated with antibodies to cell-surface or synaptic proteins has changed the paradigms for diagnosing and treating disorders that were previously unknown or mischaracterized. We review here the process of discovery, the symptoms, […]

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 […]

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 […]

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 […]

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 […]

“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 […]

FDA approves drug for relapsing forms of multiple sclerosis – possible implications for autoimmune encephalitis? April 26, 2017

Medpage Today reports that the FDA has approved the biologic drug ocrelizumab (Ocrevus) for treatment of relapsing forms of multiple sclerosis. Ocrelizumab is an anti-CD20 monoclonal antibody targeting B cells which is the same mechanism of action as rituximab (Rituxan), which some earlier studies found to be effective against both relapsing-remitting and progressive MS. Off-label use of rituximab […]

“Brain under attack” by Carol Harbers May 5, 2017

Duke Health recently posted an article by Carol Habers that follows the four-year journey to an autoimmmune encephalitis diagnosis of Lucas Quinones-Reed.  “Reed, Quinones, and Lucas met with Dr. Heather Van Mater, MD, a pediatric rheumatologist and Dr. William Gallentine, DO, a pediatric neurologist. ‘They came in with a box full of medical records,’ said Van Mater. Immediately, she saw […]