Luke is Founder and Board Chair of KIF1A.ORG, inc. Luke and his wife, Sally, started KIF1A.ORG in 2016 following their daughter Susannah’s diagnosis of a rare neurological disease caused by a mutation in her KIF1A gene. In 2017 Luke left a successful career in film and television to accelerate discovery of treatment for Susannah and children like her. KIF1A.ORG is a global community working to drive translational research and develop treatments for KIF1A Associated Neurological Disorder. With a focus on access to genetic testing, research strategy and outcome measures, Luke’s mission is to forge efficient collaborations within the scientific and patient communities resulting in treatment for KIF1A Associated Neurological Disorder, and other rare neurological diseases affecting children. www.KIF1A.org.
Quote on joining “It’s an honor to work with a team of people so committed to improving the lives of children affected by severe genetic conditions. It’s not about identifying the problem and moving on, it’s about identifying the problem, caring deeply for families and doing whatever is needed to swiftly and safely bring treatment to people affected by rare diseases; people who are racing against time to find diagnosis and cures. Yes, this is a mission I am honored to join, and a mission I know is at the core of Congenica.”