Patient Support

The AE Family weekend in Durham, NC January 30, 2019

Just a reminder to let you know that the AE Family weekend is coming up in about four weeks on March 2 in Durham, NC. Meet other families going through similar challenges. Share stories and learn about the latest treatments and discover strategies to make every day better. HAVE FUN AND GET ACTIVE with our annual […]

Medicine Assistance Tool August 21, 2020

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 […]

We Got A Match! May 7, 2021

The Research Network funds research that has a direct impact on those affected by AE. We have two generous donors that will match any donation you make to the Research Network, up to $15,000.  With your support last year, we are investing in three impactful AE studies! We will announce these grant recipients on Tuesday May […]

Join the AE Awareness session in Ohio July 9, 2019

Team Fledderjohn is fundraising and raising AE Awareness in honor of their son Alex, a bright young man who was diagnosed with Anti-NMDAR Autoimmune Encephalitis after being misdiagnosed for over 7 years. Please join them on August 17, 2019 in West Chester, Ohio for an AE Awareness gathering. They will have a neurologist and psychiatrist […]

Good news! October 4, 2020

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 […]

The 2021 AEA Community Seed Grant winners May 11, 2021

Last year we launched the Research Network at the start of the COVID-19 pandemic. A year later, we are still in the midst of the pandemic but seeing the light at the end of the tunnel. With your support in 2020, we can financially support three research studies focused on the diagnosis, management, and outcomes […]

Susannah Cahalan and Dr. Najjar discuss AE August 14, 2014

Susannah Cahalan and Dr. Souhel Najjar NY Times best selling author and AE survivor Susannah Cahalan reads from Brain on Fire and has a conversation with the doctor who saved her life, Dr. Souhel Najjar. The Autoimmune Encephalitis Alliance hosted a series of Autoimmune Encephalitis awareness events at Duke University Medical Center, March 26 and 27, 2014.  International experts […]

Ask the Panel September 10, 2019

AE Alliance receives questions on a daily basis from patients and caregivers on diagnosis, treatment, recovery, and research. Sometimes these questions are very specific, but often they will apply to a lot of patients and caregivers. Starting in October, we will have a new segment in our newsletter: Ask the Panel. Your question will be […]

We are sending virtual hugs! November 19, 2020

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 […]

Novel therapeutics and biomarker discovery May 12, 2021

Over the past 20 years, significant advances have improved our understanding of diagnosis, treatment, and underlying causes of AE. The number of new publications has increased dramatically in the past few years. And here, we will share some recent advances made in the area of novel therapeutics and biomarker discovery. Sell at al., Autoimmune encephalitis: […]