Luke Rosen founded KIF1A.ORG in 2016 following his daughter Susannah’s KIF1A diagnosis. Today, KIF1A.ORG has several programs driving discovery of treatment for neurodegenerative diseases. In November 2022, Susannah was the first child to receive an experimental ASO treatment developed by the N-lorem foundation.  Luke’s mission is to accelerate biotech innovation and forge efficient collaborations to rapidly discover treatment for families affected by neurodegenerative diseases.  Luke has held various senior level positions in biotech working on genetic and neurological conditions, including KIF1A.  In 2024 Luke started the nonprofit Rescue 7: Firefighters for Patients, an organization with the mission to provide free housing, transportation, and food for patients traveling to participate in clinical research. A cancer survivor himself, Luke advocates for policy and care on behalf of families affected by 9/11 related cancer.  Luke is a Firefighter in Suffolk County, New York where he lives with his wife, Sally, and their two children. www.Rescue7.org