Luke Rosen is the founder of KIF1A.ORG, a nonprofit organization working to discover treatment for KIF1A, a rare genetic disease. Luke and his wife, Sally, started the foundation in 2016 when their daughter was diagnosed with KIF1A. KIF1A.ORG is a patient-led foundation with a growing registry and active core of patients and caregivers.
Collaborating closely with the scientific community, the foundation plays a central role in research and innovation leading to treatment of rare, neurological diseases. Luke also leads the Patient Engagement initiative at Ovid Therapeutics, a rare disease biotech in New York City.