Kari has made it her life mission to use her 35 years of nonprofit and volunteer management experience to help create a future where everyone with TSC has what they need to live their fullest lives. She has served as President and CEO since November 2007 and previously held progressive leadership positions with the organization since 2001. Kari is responsible for the overall management and administration of the organization including strategic planning, implementation of organizational strategies and evaluation of results to ensure the TSC Alliance meets its mission. During her tenure, the TSC Alliance established a comprehensive research platform fostering collaboration with industry and academia to move treatments for TSC forward in a more expedited way. 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, including pivotal trials that have led to three FDA-approved drugs specifically for TSC. In 2019, the organization launched a Research Business Plan with the goal to change the course of TSC for those living with it today and for generations to come paired with an aggressive fundraising campaign leading to more than $16 million raised. Since joining the TSC Alliance, the organization has grown from a $2.1 million annual operating budget to $10 million in 2022 and is heralded with top ratings by watchdog organizations. 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 Trent, Bradey, Wynter and Rhys and grateful to her husband Chris for his unending support. When not working, she enjoys traveling, playing golf and being an avid Minnesota Vikings fan. Read Kari’s Profile in Success.
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