I am a poet, a writer, and a storyteller. I’m also a student, and an older brother to a young man with FA and special needs. I’m a DACA recipient. I’m here. I’m present. I am more than my current mental state, and more than this diagnosis.

Everything we do at the Fanconi Cancer Foundation (FCF) starts with the individual, because understanding the lived experience of FA is essential to improving care, advancing research, and strengthening support. As gene therapy and other promising treatments move from clinical...