AE Alliance Blog

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.

My sister’s journey with AE

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 …

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We are sending virtual hugs!

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 …

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World Encephalitis Day 2021

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. …

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Building Bridges

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, …

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World Encephalitis Day Conference 2021

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 …

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Vitamin D

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 …

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Working together to ensure best outcomes for AE patients.

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

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Good news!

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 …

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AE on the Hill

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 …

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