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.

Treatment of autoimmune encephalitis with immune based therapies

The Journal of Neurology, Neuroscience, and Psychiatry reports on autoimmune encephalitis patients treated with immune based therapy including rituximab.  Authors Dowland F, Swayne A, Bhuta S, et. al. discuss three cases and conclude, “The field of neuro-immunology has seen a plethora of newly discovered autoantibodies, yet there remain a significant number of patients, with features suggestive …

Read more

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 …

Read more

AEA sponsors Boston meeting on future of autoimmune neurology with ~70 medical professionals

  Roughly 70 researchers, nurses, neuropsychologists, neurologists, residents, fellows, patient advocates, patients, and families attended a “Dinner and Discussion on the Future of Autoimmune Neurology” on the evening of 4/27/17, held at the Richard Simches Research Center at Massachusetts General Hospital (MGH).  Organized by Dr. Jenny Linnoila, a neurologist at Massachusetts General Hospital, the overall …

Read more

“Brain under attack” by Carol Harbers

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 …

Read more

FDA approves drug for relapsing forms of multiple sclerosis – possible implications for autoimmune encephalitis?

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 …

Read more

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

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 …

Read more

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

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 …

Read more

HESA helps promote encephalitis research with funding pledge to AE Alliance

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 …

Read more