AE and Learning by Alex (AE Survivor) What am I to say? If anything, I want readers to know how AE affects yet another person, writing a blog and (I’m crossing my fingers on this) what a parent, friend, colleague, or, most of all, those in the throes of the illness can take away and use …
On Saturday, March 6, 2021, AE Alliance will organize the 9th annual Florence Forth run/walk in Durham, NC and kick off the first virtual Florence Forth run! Will and Leslie McDow started the Florence Forth run’/walk to commemorate the day that their six-year-old daughter Florence died from complications of autoimmune encephalitis. Every year they run …
Steve! It’s Mom. I don’t know what’s going on. Joseph woke up having seizures this morning. He’s at the hospital. I’m on my way there now. Call me!” I would listen to this harrowing voicemail about an hour after it was received. Mom was right. Suddenly, Joe was having seizures when he’d never had them …
Greetings AE Family & Friends, We are excited to unveil a beautiful new card series, Lily’s Journey Back, for purchase in support of the Autoimmune Encephalitis Alliance. Sixteen-year-old Lily Westerkamm, for whom the card set is named, was only fourteen when she was diagnosed with AE. During her treatment at Riley Hospital for Children at IU …
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 …
