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For two and one-half decades, Kari has dedicated her life’s work to building a future where everyone affected by tuberous sclerosis complex (TSC) has what they need to live their fullest lives. She joined the organization in 2001 and has served as President & CEO since 2007. Her leadership has shaped not only where we are today, but what is possible for generations to come. Kari first joined the organization as Director of Community Alliances, where she traveled across the country meeting families and individuals in their living rooms, offering compassion in coping with a TSC diagnosis and creating opportunities to grow larger connections in the TSC community. Over the next few years, Kari built a comprehensive, nationwide network of support that has since expanded internationally, ensuring that no one has to face the journey with TSC alone. While holding progressive leadership positions with the TSC Alliance, Kari and has always put the community at the center of everything the TSC Alliance does, elevating the voices and experiences of those affected to drive decision-making. Under her direction, the organization has grown from a $2.1 million annual operating budget to $10 million and is heralded with top ratings by watchdog organizations. She has mentored countless professionals in the rare disease space, providing guidance and support to other advocacy organizations. She has also fostered partnerships across academia, industry and government, and with other health advocacy nonprofits to work together to make an even greater impact on the lives of those with rare diseases. Because of Kari’s vision, the TSC Alliance has become a catalyst for discovery and collaboration—advancing research, accelerating clinical trials, and helping bring three FDA-approved treatments to the TSC community. Her leadership has strengthened our foundation, expanded our reach, and inspired bold action through initiatives like the 50 Forward Fund Campaign. Kari reminds us every day that impact is built not only through strategy, but through compassion, persistence, and belief in what’s possible. Thank you, Kari, for making our mission your life’s work and for continuing to redefine the impact an organization and community can have on changing the course of a disease. As we mark this milestone, we also celebrate the countless lives touched—and the future Kari continues to shape. Please join us in honoring Kari and thanking her for 25 extraordinary years! |
