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Kari Luther Rosbeck

4 Podcast Episodes

Latest 28 Jan 2023 | Updated Daily

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From Pain To Purpose: Kari Luther Rosbeck

NORDpod

Kari Luther Rosbeck is the President & Chief Executive Officer of the TSC Alliance, a nonprofit whose mission is to find a cure for Tuberous Sclerosis Complex (TSC) while improving the lives of those affected. Kari began her life as a Theater nerd and started her own company in NYC after graduating from SUNY Albany. Tragedy struck when she lost her newborn to SIDS. Today she leads an incredible team and fights for equity and quality of life of tens of thousands of patients impacted by this rare genetic condition. Aside from nerding out on all things Sondheim, she and host Matthew Zachary also dive into the "How a bill becomes a law" process of drug development. There's nothing quite like getting a drug approved that you know will actually make a dent in the universe for thousands of people. Enjoy the show.NORDpod is the official podcast of The National Organization for Rare Disorders. For more information visit https://rarediseases.org.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

33mins

30 Mar 2022

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

TSC Talks!

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)

32mins

16 Mar 2019

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

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 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)

32mins

16 Mar 2019

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#244 Tuberous Sclerosis Alliance - Kari Luther Rosbeck

Through the Noise

Kari Luther Rosbeck spends most of her days fighting the Tuberous Sclerosis Complex -- the rare genetic disorder that is the leading genetic cause of both epilepsy and autism -- we were fortunate to get her on the show today to discuss some of the strategies her staff at the Tuberous Sclerosis Alliance employ in the struggle against this horrific illness. A common problem many organizations have is getting heard Through the Noise (ding ding ding) especially with the tremendous variety of illnesses and disorders that can affect infants and children, so raising awareness among pediatricians and so they'll be able to recognize the signs of TSC and treat them appropriately. The TSA has recently launched a new website to streamline their educational and outreach efforts and make the available research easier for professionals and the public to find. We also address the techniques for courting and closing major donors and sponsors so there are some useful takeaways for the members of your development team. 

48mins

13 Feb 2017

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