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 AE Alliance is proud to participate in Rare Disease Day, launched by EURORDIS and its Council of National Alliances, on February 28. We appreciate the Mesothelioma Cancer Alliance and the National Organization for Rare Diseases bringing us into this day of recognition. This year’s slogan is “With research, possibilities are limitless.” While each participating organization …
One of the one of the largest university hospitals in Europe, Charite’, recorded significant progress in treating anti-NMDAR, including in patients who did not previously respond to treatment. Anti-NMDA receptor encephalitis is an inflammatory disease that affects the central nervous system. It is a rare autoimmune disease that results in the body producing antibodies against …
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 …
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 …
In her New York Times bestseller Brain on Fire: My Month of Madness, journalist Susannah Cahalan describes dreadful psychological experiences associated with her eventual diagnosis of autoimmune encephalitis. Compared with other forms of autoimmune disease and other types of encephalitis, knowledge about this particular diagnostic entity seems to be unfamiliar to most physicians; the medical …
Jamie David Smith has written a terrific article on the struggles of siblings of special needs children. Smith speaks to Rachel Feichter whose daughter, Talia, has autoimmune encephalitis. “Documentary filmmaker Rachel Feichter has a typically developing 11-year-old and a 7-year-old, Talia, who has special needs as a result of a neurological autoimmune disease, Hashimoto’s encephalitis. …
Autoimmune encephalitis in psychiatric institutions: current perspectives Bost et al. Neuropsychiatr Dis Treat. 2016; 12: 2775–2787. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5089825/ Autoimmune encephalitis is a rare and newly described group of diseases involving autoantibodies directed against synaptic and neuronal cell surface antigens. As neurological symptoms are fairly well described in the literature, this review focuses on the nature of …
Suzi and Bob Given have contributed $25,000 to establish a matching campaign for the Autoimmune Encephalitis Alliance. This means donations we receive will be matched 1:1 up to $25K, by the Given’s gift. Bob is recovering from autoimmune encephalitis and states, “I directly benefited from the work being done by AEA, as have so many others. This donation …
A special thanks to Emily for guest blogging for AEA. Here is her story. 2015 was shaping up to be a great year. I had moved to Charlotte, NC just over 2 years ago and bought my dream town-home in one of the most sought after neighborhoods. I found my groove here, and had a …
The Autoimmune Encephalitis Alliance, along with Children’s National Health System, and the Childhood Arthritis and Rheumatology Research Alliance, co-sponsored the first International Pediatric Autoimmune Encephalitis Treatment Consensus Meeting at the Carnegie Endowment for International Peace in Washington, DC, on November 14. “The AE Alliance was honored to help bring many of the world’s leading experts …
