To our AE Alliance family and friends, In these unsettling days requiring extraordinary measures to safeguard against COVID-19, we, at the AE Alliance, are more concerned than ever for your wellbeing. From its outset, there has been uncertainty, confusion, and anxiety about this virus. Disruptions to our daily lives are unprecedented and information is rapidly …
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 …
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 …
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 …
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 …
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 …
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 …
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 …
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, …
My daughter Lola is 2 years old and recently suffered AE. Her lab results all came back negative for any virus, cancer or disease. Her lab work even showed that AE was not the cause but because she has a blood disorder they concluded she suffered from AE. Lola was doing just fine besides dealing …
