Zaina Zaid Nemer

Zaina, from Gaza City, is the seventh patient in the ION283 Safety Study.

She was diagnosed with the ultra-rare epilepsy at the age of 13. Before her symptoms progressed, she loved to play basketball and was her team’s captain.

A stellar student, she applied herself to physical, occupational, and speech therapy just as she had in school. Zaina relied on medication to manage her seizures, and she even returned to school to take some exams.

2024: Help Lafora Patient Zaina and Family Evacuate Gaza

Everything changed in October 2023 – surrounded by violence and destruction, the hospital where she received treatment was no longer operable. Her family evacuated repeatedly to escape the fighting. There were times she lost the ability to speak and move because she was in status epilepticus, which terrified her mother. Her family was desperate to access medication and get to safety.

“There is nothing in pharmacies…There is no clean place here. We eat with the lids of cans, and I am careful when using them so as not to harm her,” shared her mother.

Zaina’s uncle started a GoFundMe in January 2024 to help her.

2025: Hope in Dallas

Zaina is one of 10 eligible patients participating in the ION283 Safety Study. Earlier in 2025, she made it to Egypt and recently traveled to Dallas, Texas, where she received her first dose in July 2025. Accompanied by her dad, Zaina has even had the opportunity to connect with other Lafora patients. She recently celebrated her 19th birthday in Dallas. Zaina and her family are so thankful for this opportunity and the hope it has brought them.