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 rare neurological 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 or receiving long-term treatment. Rescue 7 also supports advocacy groups through innovative programs in coordination with fire departments across the country. A cancer survivor himself, Luke advocates for policy and families affected by 9/11 related cancer. Luke is a New York State Firefighter and lives in Long Island with his wife, and their two children. www.Rescue7.org www.KIF1A.org
In this panel, patient advocates, caregivers, and community leaders will discuss the special sauce. This panel will leave you with actionable, tangible take-aways to improve therapeutic development, strengthen pipelines, build patient-driven company cultures, impact patients in need of treatment, and efficiently meet business goals through authentic and powerful patient partnerships.
This stand out panel will be an open dialogue with ideas to integrate the patient community into biotech process, and how new advocacy organizations can galvanize as a community to de-risk the orphan drug development process… IF we take this beyond the panel and into the process. Today.