Advocacy

The AE Alliance hosted the annual Florence Forth Race on March 3, 2018, drawing over 1100 runners and walkers. Some were AE survivors and their families from all over the nation and Canada. Cold weather did not dampen the spirits of participants as they ran, walked and cheered each other on for this fundraiser that […]

Bob Given was diagnosed with CASPR2 encephalitis at the age of 71. Up until that point he was running his CPA firm and was heavily involved in the community. Then suddenly his world was taken from him. Nevertheless, Bob feels he is lucky. Lucky to have been diagnosed quickly, lucky to have received proper treatment. […]

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 […]

I am not a runner. I cringe at the thought of running. So naturally, when Susannah Cahalan told me about the Florence Forth Road Race in Durham NC, I was a bit skeptical. However, when she added that there would be fellow survivors of autoimmune encephalitis attending, I made my decision to go. There were […]

We are excited to announce Texas Children’s Hospital’s upcoming “AE Family Day of Hope” on July 28, 2018 in Houston, Texas. Children are welcome and activities will be provided! This day will be filled with educational information from physicians, nurses and neuropsychologists, therapists and child life staff. This day has been organized to bring together […]

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 […]

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 […]

Hailey Bekos and her family star alongside Cody Calafiore, a former contestant from CBS’s “Big Brother,” to promote Philadelphia’s Ronald McDonald House. Hailey is a 15 year old recovering from autoimmune encephalitis. When she first contracted the disease two years ago she lost the ability to walk, talk, and control her body. Now, thanks to treatment […]

Texas Children’s Hospital’s “Annual Day of Hope” was well attended and a great success! Around 100 patients, family members, faculty and staff attended this event, lead by Eyal Muscal, MD, pediatric rheumatologist at TCH. Families mingled over lunch, children enjoyed creative activities and a talk was given by Dr. Muscal on the current status of […]

We are excited to announce the first AEA Support Group Meeting in Ohio, the first of many to come! This Support Group brings together patients and caregivers that have been affected with Autoimmune Encephalitis. The support group provides an opportunity for patients and caregivers to share personal experiences and feelings, coping strategies, or firsthand information […]