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 diagnosis, treatment, recovery and research in AE. Amobi Okoye, NFL player and AE survivor spoke about his personal experience with the disease. Other academic presenters from Texas Children’s spoke about the usefulness of multidisciplinary care, rehabilitation and working closely with your child’s school in addressing academic needs. Question and answer sessions allowed for meaningful interaction with the faculty and staff for the families who traveled from near and far for this Day of Hope.
A family member who attended the event stated, “We flew in from Chicago for an appointment with Dr. Muscal (who we love) and to attend the AE Family Day of Hope. For our family, hearing about the rehabilitation process was very helpful. When I asked my children, who are 13 and 17, what their favorite part of the trip was, they said it was hanging out with other kids who have AE and meeting Amobi Okoye. The families we spent time with, outside of the event, are already talking about returning next year for another family day.”
We were honored to be invited to this event and look forward to many more! We express our gratitude to Texas Children’s for hosting events like this, Eyal Muscal, MD, and all the staff at Texas Children’s who made it happen, Amobi Okoye for his attendance and inspiration, Mandy Kuftic, a family member instrumental in organizing the Day of Hope, and Ed Arditte, who represented the AE Alliance at the event. We also thank Dr. Muscal for serving as a member of the AE Alliance Scientific Advisory Committee.
Amobi Okoye, NFL player and AE survivor with a patient and family