The AE Alliance blog endeavors to educate, inspire hope and build a community among patients, families and caregivers. This blog is written for families, patients, caregivers and anyone interested in learning more about autoimmune encephalitis.
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 …
The AE Alliance has accomplished so much with a small staff and a dedicated board. Yet there is so much to be done to change the trajectory of this disease – to ensure rapid diagnosis, appropriate treatment, and advanced research so that no one faces this disease alone. To achieve this mission requires taking the …
Every week I will share some new details on the 2020 AEA Family weekend because we are revamping this wonderful event! New in 2020 will be the location; the Museum of Life and Science in Durham, NC. This is a great location for everyone and every age and has so much to offer. Their outdoor space is most impressive. You …
You are invited to join us from March 6 – 8, 2020 for the AEA Family Weekend 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. Meet with experts in the field of Autoimmune Encephalitis. There is plenty …
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 …
When I was diagnosed with anti-NMDA receptor encephalitis in 2010, I didn’t understand what that meant – and not just because I had a brain disease. My symptoms, ranging from paranoia and mania to the inability to walk or use my hands, seizures, and no longer being able to read or follow conversations, varied so …
AE Alliance is proud to be joining forces with The Anti-NMDA Receptor Encephalitis Foundation, Encephalitis 411, the Encephalitis Society, HESA, and Encephalitis Global in organizing the World Encephalitis Day 2020 Conference in Dallas, TX. The World Encephalitis Day 2020 Conference welcomes survivors and caregivers to attend and interact while celebrating World Encephalitis Day. We feel very fortunate to have …
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 …
The last 2 years of my life seem to have disappeared from my memory. Gone. Holidays, weddings, a funeral, birthday parties, Christmas and New Year. Friends and family keep telling me things I’ve done and the way I’ve behaved, some of which are very embarrassing to hear. It’s just not me. This is the result of the …
