Category: Patient Support

Texas Children’s Hospital sponsors “AE Family Day of Hope: Navigating Autoimmune Encephalitis”

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 …

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Ravi’s story from India

We sometimes hear from patients and family members around the world. We are pleased to share this wonderful story of struggle and recovery written by a young girl’s father about their family’s experience with anti-NMDA receptor encephalitis. This disease strikes all ages of people in all countries. We share this story in the desire to …

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Join your AE Community on March 3rd!

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 …

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Amobi Okoye, NFL Defensive Tackle, shares a remarkable story of surviving AE

“I am a walking miracle.” These are the words of Amobi Okoye, who shared intimate details of his battle with anti-NMDA receptor encephalitis on ESPN’s Monday Night Countdown this week. Drafted by the Texans at only 19 years old, he played 6 seasons for Houston, then 2 for Chicago. He was the picture of health, …

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Recovering anti-NMDAR patient shares advice via voice memo

Shawn Kregan contacted the Autoimmune Encephalitis Alliance in August of 2016, and we have been connecting regularly ever since. He has put together a voice memo to aid and inspire those who struggle with AE.  Shawn wants everyone to know that sharing experiences gives others confidence and strength, so don’t be afraid to tell people …

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Wall Street Journal reports sharing group health stories allows for insight for doctors

Rachel Emma Silverman from the Wall Street Journal reports that health care providers who organize patient discussion groups are finding that vast amounts of information are to be gained. They are asking patients with similar conditions to share stories. The idea behind these “experience groups” is to elicit insights about illnesses, with the goal of understanding and …

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