Isabella Coulstock had never performed Who I Am live before that night in Paris.

When she finally did, the room went still.

As her voice filled the space, a video played — a montage of Josie's life, her happiness, her hard times, the big heart that takes her mommy's hand. FOXG1 families felt seen. Those newer to the cause felt the door open wide.

Many were in tears. All of them reminded, in the span of a few minutes, exactly why this work matters — and who it is for.

I joined Ciitizen and initiated our entry into neurological diseases because I am both passionate and desperate to find an answer for my daughter. At Ciitizen, we’re creating a platform where medical records are collected on behalf of each patient, then automatically digitized into the computational data we need. From there, sophisticated machine learning technology is used to extract clinical data in order to create regulatory-grade Natural History Studies that do not require exorbitant amounts of time, energy, or money. Patient reported outcomes can then be added by us parents.

More importantly, this database of computational data we’re creating will be accessible and open to all patients, parents, caregivers, clinicians, academics, and biopharma researchers. Our goal is to eliminate the slow, manual, and expensive processes that we currently use to collect information and use the best technologies to be quick, cost-effective and more accurate when it comes to developing research.