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.
The following was sent to us by Erin Wicke Dankert to honor her mother Rita. “My family has been very open with my Mom’s experience in hopes of helping others with this condition.” AEA is so appreciative of this personal sharing by all who loved Rita. In March, my family suffered the devastating loss of …
At the Autoimmune Encephalitis Alliance one of our goals is to promote research among professionals so that advancements can be made in the study and treatment of autoimmune encephalitis. We are pleased that in the spirit of collaboration the United Kingdom-based Encephalitis Society has extended the call for abstracts for their annual meeting to the …
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 …
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 …
The following contains a sensitive request, and is a copy of a letter sent to medical professionals that are part of AEA’s Clinicians Network. We, at AEA, thought that those who have connected with us over the years would want to see this extraordinary request. Please know that we treat such a call for samples with …
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 …
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 …
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 …
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 …
