My journey to surgery began with a routine visit to the orthopedist for a referral to the wheelchair clinic. I needed an adjustment to the chest lateral—it was causing a sore spot under my arm. I have used a wheelchair since I was five years old, so I was used to the insurance process, which forced a doctor’s visit before seeing the therapist who actually knew what I needed. The orthopedist ordered the usual X-rays, and my parents and I arrived in his office expecting a conversation about my latest successes in college and what I was planning for winter break. We were not expecting to hear that I needed spinal fusion surgery.

In a groundbreaking moment for the FOXG1 community and the broader rare disease and neurodevelopmental communities, we were honored to welcome Abraham “Abey” Weitzman to the stage at the 2024 FOXG1 Parents and Caregivers Conference. Abey is not only a FOXG1 patient but also an accomplished individual breaking barriers and reshaping perceptions about non-speaking individuals with FOXG1 syndrome. He is a student at Columbia University, a published writer, and a guest lecturer at Long Island University, where he educates teachers on how to better support non-speaking students. Additionally, Abey is the first FOXG1 patient to join the FOXG1 Research Foundation Advisory Board—a testament to his leadership and influence.

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.

I’m told I was a good eater when I was born, but I spit up a lot. By one year old, I was underweight and unsuccessful at eating solid food. My mom was committed, but no amount of her love and persistence would change my inability to chew and swallow. My gastroenterologist, Dr. Kazlow, switched me to Pediasure to increase my calorie intake. It had everything I needed to grow big and strong, in theory.

Abraham Weitzman has been named to the FOXG1 Research Foundation Advisory Board. Abey is the first board member to represent those with FOXG1 syndrome.