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Patient J

Patient J is 26 and now lives in an apartment with a great friend and a support schedule. She works (with some support and very kind people), volunteers, votes, takes the train and has a full social life with wonderful friends. She uses visuals for scheduling and reminders as her memory is poor. She needs a lot of sleep. Learning was harder and slower when she was younger and had seizures. She stopped needing seizure meds at age 16. She had some great therapists and teachers in school and has a fabulous support team and community now. It always takes a village! She is adored and we are extremely proud. My hope is that research will provide better therapeutics for all kids and adults struggling with seizures, and neurological regression caused by rare genetic neurodevelopment disorders like DLG4.

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