Texas Children’s recently convened the region’s first autoimmune encephalitis (AE) family day. Headlined by former NFL player Amobie Okoye, an AE survivor himself, the event was held on July 28 at Texas Children’s Pavilion for Women. Seventy family members, 23 AE patients and their siblings, and 20 volunteers from Texas and beyond made the day a rousing success.
Dr. Eyal Muscal and the division of Immunology/Allergy, Rheumatology & Retrovirology hosted a nurse and family panel as well as educational sessions by members of the neurology, physical medicine and rehabilitation and behavioral health teams. Families also were able to form new connections and strengthen previous relationships formed via social media.
The goal of the event, titled Day of Hope, was to raise awareness of this spectrum of immune-mediated brain disorders. Plans are already underway for next year’s event, which will include adolescent AE health, transition to adult care, and needs of adult AE survivors.