Why I’m doing this.
I’ve spent my entire adult life as a connector of people.
Being a connector is at the center of my identity. I have a talent for it.
The way it happens is: i need something to exist to connect a group of people, but it doesn't exist yet, so i make it.
In the early 2000s, I was living in New York City, and I felt a sense of disconnection, so my friends and I created a successful company called Metro Metro, which gathered hundreds of people for massive citywide scavenger hunts each year.
Our daughter Tess has a very rare genetic disease, so rare that she was only the 8th known patient in the world. At the time, there wasn't any organization connecting all the families, so my wife and I made one, and now our nonprofit has found over 230 families worldwide and is successfully funding hundreds of thousands of dollars of genetic research.
I made a film about Tess and her syndrome, and there wasn't a film festival in existence dedicated to rare disease, so I teamed up with another rare-disease dad and we started an LLC and launched our own film festival called Disorder, which ended up functioning not just as a festival and showcase for films but as a conference to welcome and link everyone who lives with rare diseases and works to cure them.