Kari Luther Rosbeck

President & Chief Executive Officer

Kari joined the TS Alliance in June 2001 and became President and CEO in November 2007. She is responsible for the overall management and administration of the organization. This includes strategic planning, implementation of organizational strategies and evaluation of results, in conjunction with the board of directors, to ensure the organization meets its mission to find a cure for tuberous sclerosis complex (TSC) while improving the lives of those affected.  Kari has been involved in nonprofit fundraising and volunteer management for nearly 30 years. During Kari’s tenure as President and CEO, the TS Alliance established a comprehensive research program fostering collaboration with industry and academia to move treatments for TSC forward in a more expedited way. The “Unlock the Cure” research strategy focuses on key points along the drug discovery path: TS Alliance Grants Program promoting young investigators; Drug Screening by establishing a Preclinical Consortium; Clinical Research Consortium expediting implementation of future clinical trials and recruiting for clinical studies; biomarkers identification; and the TSC Natural History Database expansion including a Biosample Repository. “Unlock the Cure” also serves as a capital fundraising campaign, raising more than $10 million for TSC research since August 2011. Because of her leadership, the organization has taken an active role in educating the TSC community about clinical trials to diminish the time for recruitment. In the past nine years, there have been FDA approvals for two therapies to combat infantile spasms, the most catastrophic form of epilepsy that up to a third of infants with TSC may experience, and three approvals of a drug with a TSC indication, specifically SEGA, AMLs and partial-onset epilepsy associated with TSC.  Kari previously served as Executive Vice President, overseeing the national volunteer outreach program and was responsible for fund development. She developed and implemented a vast national network of more than 30 volunteer branches called Community Alliances; increased volunteer participation from 90 individuals to more than 2,000; and through her involvement in special events and major gift fundraising, helped increase the annual revenue by more than 50 percent. Kari graduated with a BA degree in Theatre from the State University of New York at Albany and upon graduation founded a theatre company with fellow graduates in New York, NY.  After the loss of her first child, Noell, to sudden infant death, she dedicated her career to helping other families. Kari is the proud mother of four sons and grateful to her husband Chris for his unending support.  When not working, she enjoys traveling with her family, playing golf and being an avid Minnesota Vikings fan. Read Kari’s Profile in Success.

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