Kristen and Matt Wilsey knew something was wrong with their daughter Grace from the moment she was born. But it would take months for them to learn that she had an ultra-rare genetic disease with no cure in sight. Knowing that traditional pharma would never save his daughter, Matt, a tech entrepreneur decided to attack the problem the Silicon Valley way — with venture capital, radically open collaboration and a seat at the table for end users. Just as he'd hoped, the startup attracted some of the best brains in medicine and, against all odds, hope for his daughter. The Wilsey's story offers important lessons for any entrepreneur with a passion for solving a problem few others care about.
I wrote about the Wilseys and the doctors they're working with for Fast Company. Check it out here.