In the past few weeks we have had some amazing people raise awareness for Autoimmune Encephalitis and raise funds for the AE Alliance, so we can continue to invest in research and improve clinical care. Let’s start in New York City. A friend of one of NYU’s hockey players got diagnosed in the spring with …
In 2015 my daughter Marie was entering 7th grade. She was very nervous over the summer prior to entering the new school. The first 4 weeks of school she skipped out on doing her homework and participation in classes. When I confronted Marie she told me that going to the Math resource room was making …
With Thanksgiving upon us in the US and the holiday season approaching, here at the Autoimmune Encephalitis Alliance we want to take a few minutes to express our heartfelt gratitude to the many people who make fighting this rare illness possible: Thank you to the people affected by AE and their families and friends, who …
A group of talented local high school students from The Fine Arts Center will be holding “Play It FWD” …Kids with a Purpose on December 2nd to raise funds for The Autoimmune Encephalitis Alliance. “Play it FWD” will be an annual live music event with the purpose to support a nonprofit organization of the students’ choice …
I remember thinking when this year began that things were finally coming together for the Scheinert girls, who have had no shortage of ups and downs. My mom, two sisters, and I have been through it all together. I was diagnosed with Juvenile Rheumatoid Arthritis before I could walk, and a variety of other autoimmune …
In the Summer of 2017, I was a 46-year old mom of two young children, working part time as an attorney, just returning from a weekend away with my girlfriends. I was having difficulty sleeping, but often had insomnia this time of year. My thoughts were becoming jumbled and weren’t making sense. Little did I …
I remember so well the day I came back into consciousness in July 2017 in Washington. I was lying in a hospital bed, President Trump making a speech on TV, and ‘Get Well’ balloons on my left. First thought was, why am I here? And second was, isn’t Obama the U.S President? Shortly after, my …
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 …
