After Luke Rosen’s 3-year-old daughter, Susannah, was diagnosed with a rare genetic condition, he wanted to do what many parents increasingly have done—help accelerate the search for a treatment.
Mr. Rosen, an actor who doesn’t have a science background, quickly learned many of the steps he would need to build a research program to help Susannah and others with KIF1A-related disorder, a neurodegenerative condition that causes some children to lose the ability to walk and speak. Among the steps: set up a foundation; find…