Jill Woodworth

Kari Luther Rosbeck, President and CEO of the TS Alliance since 2007, has masterfully steered the ship from the early days where “all we could do was hold the hands of parents as they went thru the struggle to today where we have drugs that shrink TSC tumors and are starting our first trial aimed at preventing epilepsy from ever developing in infants with TSC.” In this personal yet powerful episode, we discuss how the untimely death of her infant daughter to SIDS, opened her eyes to a yearning for meaning she never knew she had. “ I wanted to take the feelings I had and use them to change the world, so other families never had to experience the loss I experienced.” Through methodical, persistent, unrelenting grit, Kari and the families she fights for changed everything. She has built a culture of respect, creativity, and collaboration where everyone has a voice. An example of this grassroots collaboration is the Congressionally-Directed Medical Research Program which began funding TSC research at the Depart