Dr. Robin van Steenhoven (Erasmus MC University Medical Center, Rotterdam, The Netherlands) was awarded a 2023 AEA Community Seed Grant for the investigation of Seronegative autoimmune encephalitis: exploration of clinical and neuropathological characteristics. Learn more about his research and how it will impact those affected with autoimmune encephalitis. The start date for the award is September […]
Many thanks to Dr. Amanda Piquet, Board of Directors & Medical Advisory Board Member, Autoimmune Encephalitis Alliance for speaking at our November 2024 AEA Provider Monthly Education Series and presenting CAR T Therapy for Autoimmune Disease. We discussed the background of the CAR T therapy and its more recent use in autoimmune disease. We also discussed current examples […]
The Autoimmune Encephalitis Alliance and Option Care Enterprises, Inc. are co-sponsoring a clinical trial at Mayo Clinic to evaluate intravenous immunoglobulin (IVIG) treatment in patients with autoimmune epilepsy who fail to benefit from standard epilepsy medications. This study, the first of its kind, builds on Mayo Clinic research advances identifying new approaches to the diagnosis and treatment […]
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 […]
Rory Halbert was recognized at a University of Indianapolis women’s soccer game recently as part of TeamIMPACT, a program which allows children with serious illnesses to become an honorary member of a college team. Rory was recognized at halftime, as she is graduating from the program. The team wore green to show support for Rory’s […]
NO LONGER ENROLLING If you are diagnosed with LGI1 autoimmune encephalitis (LGI1) or are the caregiver of someone with LGI1, you may qualify to participate in this study conducted by Fulcrum Research Group. The goal of the study is to better understand the patient experience with LGI1 autoimmune encephalitis for the purpose of supporting potential […]
The AE Alliance is honored to receive 27 grant applications for this year’s program. We received applications from 7 countries and 17 states within the US. While research proposals and topics varied, all proposals were similar due to the requirement that all proposed studies must have direct implications for patients with AE. To learn more […]
Many thanks to Dr. Maarten J Titulaer, MD, PhD, Associate Professor of Neurology, Erasmus University Medical Center, Rotterdam, the Netherlands, AEA Medical Advisory Board Member for speaking at our January 2025 AEA Provider Monthly Education Series and presenting Anti-NMDA Receptor Encephalitis. Since the initial description of anti-NMDAR encephalitis in 2005, we have been able to determine the full […]
Did you know that our largest fundraiser is coming up on March 4, 2017, in Durham NC? That’s right, it is time for the 5th annual Florence Forth run/walk, and Family Lunch. Individuals and teams are welcome. The events in 2016 attracted almost 1500 runners/walkers, 300 volunteers, and 150 family members of those affected by […]
As research on autoimmune encephalitis has progressed over the past 10 years, pioneers in the field have often referred to it as a heterogeneous group of disorders. The commonality in various forms of AE is the underlying pathologic mechanism in a patient’s own immune system. For unknown reason the patient’s immune system has produced antibodies […]