Advocacy
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 […]
Today is Thanksgiving, a holiday for the family to come together and give thanks. This year will be different as not all families will be able to reunite for the holidays due to COVID-19. This situation may apply to our AE community even more so, as many of you are on immunotherapy or just finishing […]
Nearly 2000 runners, walkers, family members, volunteers, and supporters of all ages came out on Saturday to participate in the 4th annual Florence Forth Road Race to benefit the Autoimmune Encephalitis Alliance. Held in Durham, North Carolina, participants traveled from as far away as Germany, Colorado, Canada, Nebraska, Indiana, and California to be a part of […]
World Encephalitis Day is the global awareness day for people who have been directly or indirectly affected by encephalitis. Founded by The Encephalitis Society in the UK in 2014, it is held on February 22 each year and has reached over 80 million people in the past five years. The color associated with this day […]