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Luke Rosen
Founder,
KIF1A.ORG
United States
Luke is a community leader who works urgently to bring treatment and care to children living with neurological diseases and cancer. Luke is an advocate for firefighters and families affected by 9/11 related cancer, and is a cancer survivor himself. He is the founder of two nonprofits, a New York State Firefighter, and FEMA Task Force member specializing in search and rescue of high-risk, special needs victims during disaster relief operations.
In 2016 Luke Rosen and Sally Jackson founded KIF1A.ORG following their daughter’s diagnosis of KIF1A Associated Neurological Disorder (KAND), a rare neurodegenerative disease. Luke sits on the Board of Directors of KIF1A.ORG and is relentless in his advocacy for all patients and families affected by neurological conditions.
Recognizing the need for inclusive, diverse access to long-term care and clinical studies, Luke started Rescue 7 Firefighters for Patients: an endeavor to provide free housing, meals, and transportation for families traveling to receive treatment and participate in clinical studies.
Luke lives in Long Island, New York with his wife and two children.
Sessions
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The Next Small Thing (Small Molecules, Big Promises)28-Oct-2025Schuyler Ballroom
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