When Nasha Fitter’s daughter Amara was diagnosed with FOXG1 syndrome at nine months old, the family finally had a name for the seizures that had begun two months earlier. The diagnosis did not tell them what to do next.
Alongside other parents, Nasha helped launch the FOXG1 Research Foundation when little was known about the disease and gene therapy for brain disorders was still early. Over the next decade, that community developed mouse models and cell lines, mapped the biology, and tested possible treatments. They eventually found a gene-replacement therapy that rebuilt the corpus callosum, a brain structure affected by FOXG1, in mice. The program now has FDA clearance for a trial, with the first human dosing planned for later in 2026.
Even with a diagnosis and new hope for treatment, families still have to figure out what a symptom means, which specialist to call, how to fight an insurance denial, and whether advice from another parent applies to their child. For years, some of the most useful answers lived in Facebook groups, scattered across posts and hard to verify.
Nasha co-founded Citizen Health to make those answers easier to find and use. Citizen collects medical records on a family’s behalf, organizes and de-identifies them, extracts the clinical details that matter, and helps families learn from patients with similar histories.
Before GPT models, Citizen could gather records and extract data, but turning that information into guidance required heavy human effort. Families can now use a ChatGPT-style interface to ask questions across their own records, published research, and patterns in de-identified data from similar patients.
For Amara, that meant finding a clue after severe GI pain sent the family from specialist to specialist. ChatGPT connected Amara’s FOXG1-related low muscle tone with difficulty digesting high-fiber foods. Beans, broccoli, and grapes made the pain worse; softer, “slippery” foods worked better. That change helped Amara avoid painful meals.
Amara is now 10. Nasha began by trying to help her daughter. She went on to help advance a therapy toward human trials and build a platform that turns hard-won patient knowledge into guidance other rare-disease families can use.
