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Ironman 70.3 + AE Awareness = Andrew March 16, 2020

Hi, my name is Andrew and I have a version of Autoimmune Encephalitis called Central Nervous System Vasculitis.  I was first diagnosed with the broader AE in 2017, and more recently with the more specific CNSV.  I’m running the Ironman 70.3 Victoria, BC at the end of May to raise awareness for AE. According to […]

Ask me about AE February 29, 2020

Today is Rare Disease Day and the kick-off of our ‘Ask me about AE’ campaign. Each year, Rare Disease Day takes place on the last day of February. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives. Like […]

Andrew’s Race February 22, 2020

We are excited to announce that starting today, on World Encephalitis Day, we will be following Andrew as he prepares for the Ironman 70.3 race in Victoria, B.C. on May 31. Andrew is an AE survivor and wants to raise awareness. He already writes about his life with AE on his own blog and he […]

#Red4Wed February 15, 2020

One more week until World Encephalitis Day. Let’s all raise awareness for Autoimmune Encephalitis because far too often people with AE still go undiagnosed or misdiagnosed. World Encephalitis Day, founded by the Encephalitis Society in the UK, is the global awareness day for people who have been directly or indirectly affected by encephalitis. This day […]

It’s that time of year January 27, 2020

Wow, just like that…, 2020 is here and my family and I find ourselves preparing for another Florence Forth and AE Alliance Family weekend.  Approximately 20 of our family and friends will make the trip again this year to Durham from all over the country for Florence Forth, Saturday, March 7th.  I can’t wait to […]

Clinical approach to the diagnosis of autoimmune encephalitis in the pediatric patient January 23, 2020

Autoimmune encephalitis (AE) is an important and treatable cause of acute encephalitis. Diagnosis of AE in a developing child is challenging because of overlap in clinical presentations with other diseases and the complexity of normal behavior changes. Existing diagnostic criteria for adult AE require modification to be applied to children, who differ from adults in […]

Latest update on the AEA Family weekend! January 20, 2020

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 […]

Jim’s AE Journey January 7, 2020

While living in Idaho Falls Idaho in October 2011 my husband, 44-year-old Navy Gulf War Veteran (1987-1992), started having occasional dizziness. January 2012 he started having multiple daily “episodes” lasting a couple of minutes… distorted vision, traveling goosebumps from right temple down right side of body jumping to left leg and traveling up left side […]

Yoga Time December 23, 2019

New this year at the AEA Family Weekend is Yoga Time! On Sunday morning we will kick off the day with a Yin yoga class given by Meg Poe. As the name suggests, Yin yoga works on the yin tissues, also known as the connective tissues. Connective tissue responds best to a slow, steady load, […]

We are changing things up! December 13, 2019

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 […]