"This isn't normal, and it isn't pain-free": Luke Rosen's parenting journey

Luke Rosen was working as an actor and writer in NY when his daughter Susannah was diagnosed with KIF1A, an ultra-rare neurodegenerative condition. It's often fatal. At the time they received Susannah's diagnosis, Luke and his wife Sally didn't have much hope. There was no treatment for KIF1A, and there wasn't much work being done on it. He and Sally started the KIF1A.org Foundation so they could start building research that could go towards finding a treatment for their daughter.