The 2020 year has been unprecedented in so many ways. Though this pandemic has wreaked havoc in all our lives, our AE community has experienced the disruptions in profound and tangible ways, from interruptions in treatment to implementing particularly stringent measures to protect fragile immune systems. In partnering with you through your journey with AE …
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 …
The start of a New Year, New Beginnings and New Adventures, right? As 2020 has shown the world, nothing is predictable. I learned this lesson almost 6 years ago. Growing up in a small, suburban town – great parents, amazing sister, wonderful friends and an extended family all within 20 miles of us – life …
November is National Family Caregivers Month, which recognizes and supports all the work caregivers do to support their loved ones with autoimmune encephalitis. There are over 53 million Americans who are unpaid caregivers to family, friends, and neighbors. Caregiving often has a significant impact on the life of the caregiver. It can make maintaining your …
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. …
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 …
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 …
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 …
