Patient Support
We have just partnered with Smart Patients, to create an online support community for patients and caregivers affected by AE. We receive so many questions on diagnosis, treatment and recovery, we thought we could help more people by bringing them together in a safe online community. Here you can ask questions, share experiences, gain insight […]
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 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 […]
We are excited to announce the first AEA ‘in-person’ Support Group meeting on December 7 at the Port Washington Library located at 1 Library Drive, Port Washington, NY 11050 from 2 pm – 4:30 pm. The Support Group Leader, Sydney, has organized for Melissa Jensen, M.A., CCC-SLP of Transitions of Long Island to join us as our guest practitioner to discuss cognitive […]
As time passes and you and I feel better and better, people, even doctors, will tell you that we are fine, “it’s time to get on with life.” That sounds good to me and probably even better to you. But before you go rushing back out into that big wide world, I need you to […]
Come join your AE community at the annual Florence Forth Road Race and AE Family Lunch on March 3, 2018 in Durham, NC. It’s a chance for AE survivors to join together and share stories. The center piece of the weekend is a walk/run on Saturday morning called Florence Forth. Then after the walk/run is […]
You don’t have to be a runner or walker to support those affected by autoimmune encephalitis on March 4, 2017, but if you are, come share your spirit, laughter, and competitive spirit with 1600 soon-to-be friends at Florence Forth. There is also a wonderful Family Lunch for patients and their immediate families at noon (doors […]
Neuroplasticity is the brain’s ability to reorganize itself by forming new neural connections, allowing neurons (nerve cells) in the brain to compensate for injury and disease and to adjust their activities in response to new situations or to changes in their environment. The following is from an article in The Lancet Neurology. Written by Jules Morgan, “No […]
Over 150 patients and family members affected by autoimmune encephalitis gathered in Durham, NC, for a luncheon on March 5. Known simply as the “Family Lunch” the event is a chance to meet others affected by autoimmune encephalitis, laugh, celebrate, remember those lost to the disease, and share stories both privately and publicly. Having grown in […]
If you are reading this you already know that autoimmune encephalitis can be an isolating experience. That’s one reason the Autoimmune Encephalitis Alliance organizes and hosts the AE Family Lunch in association with the Florence Forth run-walk in Durham, NC. This year the AE Family Lunch will take place on March 5, 2016. All AE patients and families […]