TSC Talks; Steering the Ship with Passion & Purpose; TS Alliance President & CEO, Kari Luther Rosbeck

TSC Talks; Steering the Ship with Passion & Purpose; TS Alliance President & CEO, Kari Luther Rosbeck
16 mar 2019 · 32 min. 10 sec.

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...

mostra di più
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 Department of Defense because of one grandfather’s lobbying of the Appropriations Committee Chairman got $1 million set aside in the annual federal budget in 2002. We have to fight for this every single year, with our March on Capitol Hill, but since then, $83 million has been appropriated for TSC research, and it’s made a profound difference. There’s much more included here & much thanks to Kari for taking the time to share from her heart and soul and providing ongoing inspiration and hope to all those affected by TSC personally or in our loved ones, and steering us all toward a better understanding of this linchpin disease meaning that every advance made in our search for answers and a cure may also lead to answers and advances in other more prevalent diseases like epilepsy, autism, and cancer. (intro music credit: https://www.purple-planet.com)
mostra meno
Informazioni
Autore Jill Woodworth
Sito -
Tag

Sembra che non tu non abbia alcun episodio attivo

Sfoglia il catalogo di Spreaker per scoprire nuovi contenuti

Corrente

Sembra che non ci sia nessun episodio nella tua coda

Sfoglia il catalogo di Spreaker per scoprire nuovi contenuti

Successivo

Copertina dell'episodio Copertina dell'episodio

Che silenzio che c’è...

È tempo di scoprire nuovi episodi!

Scopri
La tua Libreria
Cerca