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.
World Encephalitis Day is around the corner, and the theme for 2021 is Lights, Camera, Action! Lights – Light up a local landmark Red for WED Camera – Wear Red for WED Actions – Raise Awareness The Encephalitis Society launched World Encephalitis Day in 2014 and, in the years since has reached 187 million people. …
AE Alliance and Hashimoto’s Encephalopathy SREAT Alliance (HESA) are excited to announce the virtual conference: ‘Autoimmune Encephalitis: Building Bridges.’ The aim of this conference is to enhance patient care and improve outcomes for those affected by AE, by promoting a multidisciplinary approach to diagnosis, treatment, and recovery. ‘Building Bridges’, is a place to exchange ideas, …
We had the pleasure of having psychiatrist Stephen Rush, MD discuss the role of psychiatry in AE at our recent Midwest Support Group meeting. Dr. Rush is an Associate professor of Psychiatry and the Medical Director of Ambulatory Services at the University of Cincinnati Department of Psychiatry and Behavioral Neuroscience. In his practice he not …
Mark your calendar! The World Encephalitis Day Alliance will be hosting the World Encephalitis Day Conference on Saturday February 20th, 2021. This will be a virtual conference, so anyone, anywhere can participate. We are literally taking you across the globe, with speakers from Australia, Europe, and the United States. Our Keynote Speakers are Prof. Tom …
Vitamin D (cholecalciferol) is a nutrient found in some foods like fatty fish that can be added to your diet as a supplement. Our body makes vitamin D when our skin is directly exposed to the sun, and most people meet at least some of their vitamin D needs this way. Vitamin D is required …
Dr. Pojen Deng and Dr. Anusha Yeshokumar (Mount Sinai Health System) discuss autoimmune encephalitis and a multidisciplinary approach to AE Care for the Psychiatric Times Health Minute. They also discuss long term management strategies, including recognition of broad psychosocial ramifications as well as individual cognitive and psychiatric sequelae. https://www.psychiatrictimes.com/view/collaborating-best-outcomes-patients-autoimmune-encephalitis
Everyone knows about the devastation the forest fires are causing in California, Washington, and Oregon. Millions of acres have burned, thousands of buildings have been destroyed, and lots of families have seen their house burn down. Amidst, the devastation, there was a light, a CASPR2 encephalitis survivor. Bob Given, who is 76 years old, was …
On Tuesday October 6, we launch an exciting new Advocacy program: AE on the Hill Our long-term goal for the ‘AE on the Hill’ program is bold, empowering the AE community to advocate for themselves and their families at the local, state, and federal levels to improve the lives of all those affected by autoimmune …
Dr. Ryan Kammeyer and Dr. Amanda Piquet (University of Colorado) discuss a patient with autoimmune encephalitis (AE) with multiple auto-antibodies and review the literature to look at how these multiple auto-antibodies might relate to an underlying malignancy, and how unique features of the auto-antibodies may blend together into a new presentation. AE can occur with …
The AE community is all too familiar with insurance companies denying coverage for treatments and the cumbersome appeals process they must undergo to get that much-needed treatment. These denials and appeals take up a lot of time & energy and produce frustration and uncertainty. These complications come on top of fighting the disease itself and …
