Milken Institute 160d ago

“Being an executive director or a CEO of a patient advocacy organization can be a lonely fight sometimes. Having this network that a program like LeadersLink allows really makes it feel like there's others out there fighting the fight with you.” Andrew Rosen is the chief executive officer of the National Ataxia Foundation, whose mission is to accelerate the development of treatments and a cure while working to improve the lives of those living with ataxia. He leads the organization’s strategic direction and partnerships, including collaborations with pharmaceutical companies advancing ataxia therapeutics. As part of his capstone project, Rosen focused on strengthening NAF’s national advocacy presence while expanding core efforts in diagnosis, research, and patient support. He advanced programs that identified new ataxia cases, expanded no cost genetic counseling and testing, enhanced research and training, broadened patient services, and elevated federal advocacy through Hill Days, Congressionally Directed Medical Research Programs engagement, and a new partnership to build a sustained presence in Washington, D.C. Established in 2020, the FasterCures LeadersLink Program is a capacity-building program to support the personal development of an emerging cadre of leaders of nonprofit organizations that fund or conduct biomedical research. LeadersLink focuses on building participants’ leadership skills and professional network and addressing their top priorities through mentorship, a capstone project, a series of convenings, virtual collaboration, and access to Milken Institute events and networks.