Luke Rosen and his wife, Sally Jackson, founded KIF1A.ORG in 2016 following their daughter Susannah’s KIF1A diagnosis. In 2017 Luke left his career in film and television to accelerate discovery of treatment for Susannah and children like her. In November 2022, Susannah was the first child to receive an experimental ASO treatment developed by the N-lorem foundation.
With a focus on research strategy and outcome measures, his mission is to accelerate biotech innovation and forge efficient collaborations to rapidly discover treatment for all children affected by KIF1A. Luke is a community leader who drives our collective mission to urgently bring treatment to children living with rare neurodegenerative diseases.
For over five years, Luke held various senior level positions in biotech working to develop treatments for rare, neurological conditions including KIF1A. Luke left the traditional industry setting to support rare disease endeavors and communities that are considered “too rare.” He continues to advocate for families and works relentlessly to support discovery of treatment for KIF1A and other neurological conditions. Luke works to integrate community-driven initiatives and experiences into every element of R&D.
He has a master’s degree in bioethics and is a firefighter in the Sag Harbor, New York Fire Department. www.KIF1A.org
With a focus on research strategy and outcome measures, his mission is to accelerate biotech innovation and forge efficient collaborations to rapidly discover treatment for all children affected by KIF1A. Luke is a community leader who drives our collective mission to urgently bring treatment to children living with rare neurodegenerative diseases.
For over five years, Luke held various senior level positions in biotech working to develop treatments for rare, neurological conditions including KIF1A. Luke left the traditional industry setting to support rare disease endeavors and communities that are considered “too rare.” He continues to advocate for families and works relentlessly to support discovery of treatment for KIF1A and other neurological conditions. Luke works to integrate community-driven initiatives and experiences into every element of R&D.
He has a master’s degree in bioethics and is a firefighter in the Sag Harbor, New York Fire Department. www.KIF1A.org
Speaking In
4:15 PM - 5:15 PM
Tuesday, June 6
