Abey Weitzman became the first FoxG1 patient to speak at a FoxG1 Research Conference. His speech touched on his experience living with a rare disease and offered advice for families and researchers moving forward.

Abraham “Abey” Weitzman has “turned the FOXG1 rare disease community upside down, … demonstrating that with the right tools, [FOXG1] children understand everything and can communicate effectively”. As a non-speaking writer, Abey uses the Tell Us Abey AAC system “both beautifully and brilliantly”. Abey will present “FOXG1 - The Lived Experience” providing insight to families and researchers. The presentation will combine Abey’s perspective on which symptoms are most important to treat and answers to parents' questions. For many families this will be their first chance to hear about FOXG1 from the patient's viewpoint.

When I was about six months old, my parents decided to take us out to dinner. When we arrived at a local spot, the dining room was full, so the hostess offered a table in the barroom. My parents figured that since the barroom was near the door, we could go quickly if I started crying. Sure enough, I started screaming as the entrees arrived, so my mom picked me up and walked toward the exit. A man at the bar got up and stood in her path. “I’ll take the baby. You enjoy dinner,” he said, and he wasn’t taking no for an answer. He held me in his arms and walked up and down the length of the bar while my parents and sister ate.

Like many creative writing majors, Abey W. explores personal themes in his work. For Abey, who attends Columbia University in New York City, those themes center on what life is like with a severe disability.

I’m a junior at Columbia University, and I start each day being lifted out of bed by one of my parents or aides. The bed is raised on legs my dad built and has rails covered with custom padding sewn by my mom’s friend Erin, who also makes costumes for the Muppets. My mom, an engineer, helped Erin with the renovations on her house. We all need help with something.