Name: Luke Rosen

Position: Founder at Rescue 7 Firefighters for Patients

Bio: Luke Rosen and Sally Jackson founded KIF1A.ORG in 2016 following their daughter Susannah’s diagnosis of a rare neurodegenerative condition called KIF1A. Today, Susannah benefits from an experimental treatment developed by the n-Lorem Foundation. KIF1A.ORG has several programs driving discovery of therapeutics for neurodegenerative diseases. Luke’s mission is to accelerate biotech innovation and forge efficient collaborations to rapidly discover treatments for families affected by rare neurological diseases. He 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 or receiving long-term treatment. Rescue 7 also supports advocacy groups through innovative programs in coordination with fire departments, first responders, and military branches across the country. A cancer survivor himself, Luke advocates for policy and families affected by 9/11 related cancer. He is a NY State Firefighter and member of the National Urban Search & Rescue Task Force. Luke lives in New York with his wife and their two children.

Why I’m passionate about patient engagement: “Receiving this recognition is an honor. It is an honor to represent and advocate for families in our community who are in need of rapid innovation and development of new treatment options. Our community is relentless in it’s mission to drive discovery and remove the burden of participating in clinical research. We support patients and families through partnerships with fire departments, law enforcement, and military branches across the country to develop programs that benefit patients, families, and advocacy groups.”