Advocacy
Texas Children’s Hospital’s “Annual Day of Hope” was well attended and a great success! Around 100 patients, family members, faculty and staff attended this event, lead by Eyal Muscal, MD, pediatric rheumatologist at TCH. Families mingled over lunch, children enjoyed creative activities and a talk was given by Dr. Muscal on the current status of […]
We are excited to announce the first AEA Support Group Meeting in Ohio, the first of many to come! This Support Group brings together patients and caregivers that have been affected with Autoimmune Encephalitis. The support group provides an opportunity for patients and caregivers to share personal experiences and feelings, coping strategies, or firsthand information […]
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 […]
If you are reading this you already know that autoimmune encephalitis can be an isolating experience. That’s one reason the Autoimmune Encephalitis Alliance organizes and hosts the AE Family Lunch in association with the Florence Forth run-walk in Durham, NC. This year the AE Family Lunch will take place on March 5, 2016. All AE patients and families […]
We have just partnered with Smart Patients, to create an online support community for patients and caregivers affected by AE. We receive so many questions on diagnosis, treatment and recovery, we thought we could help more people by bringing them together in a safe online community. Here you can ask questions, share experiences, gain insight […]
Every week I will share some new details on the 2020 AEA Family weekend because we are revamping this wonderful event! New in 2020 will be the location; the Museum of Life and Science in Durham, NC. This is a great location for everyone and every age and has so much to offer. Their outdoor space is most impressive. You […]
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. […]
World Encephalitis Day is February, 22, each year – just remember 222. This is a day for all of us affected by encephalitis, whether we are patients, family members, doctors, researchers, or caregivers, to come together and talk about our experiences with brain inflammation and the many forms it takes. While we at the Autoimmune […]
You are invited to join us on March 2, 2019 for the AE Family Weekend in Durham, NC. Meet other families going through similar challenges. Share stories and learn about the latest treatments and discover strategies to make every day better. Meet with experts in the field of Autoimmune Encephalitis. There is plenty of time […]
Dr. Rebecca Sadun is coming back to work with our tweens and teens at the AEA Family weekend. We are delighted to have her! Last year Dr. Sadun read a passage from “Brain on Fire” and then ask each teen to write the title and chapter names for the book about their journey and then pick one […]