What, you may ask, is TSC. When I first met our guest, Kari Luther Rosbeck, I had the same question. TSC stands for tuberous sclerosis complex. As soon as Kari defined the term for me it struck a nerve close to home for me. My great nephew actually has tuberous sclerosis complex and was first diagnosed with this rare disease when he was but a child. My conversation with Kari was far reaching and quite educational for me as I suspect it will be for you.
 
TSC affects some fifty-thousands persons in this country and about 1 million around the world. The TSC alliance, founded in 1974, has worked to promote support, research and the dissemination of information about this rare disease.
 
Kari has been the CEO for many years. She began with the organization in 2001. While her main interest growing up was in being an actress as she says, “living in New York City means that you work while developing an acting career”. In Kari’s case, she found another interest which was fundraising and being involved in the nonprofit world.
 
My conversation with Kari is quite enjoyable and, as I said, quite educational. I am sure you will find much invaluable information in this episode. At the end of our time together Kari will tell us all how we can become involved and help the TCS Alliance. I hope you will find ways to support this effort as what the organization does goes far beyond what you might think.
 
 
 
About the Guest:
 
Kari Luther Rosbeck, President and CEO, TSC Alliance
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.
 
Ways to connect with Kari:
 
Facebook: https://www.facebook.com/tscalliance; @krosbeck
Instagram: https://www.instagram.com/tscalliance; @karirosbeck
LinkedIn: https://www.linkedin.com/company/697362/admin/; @kari-luther-rosbeck-ba24805/
X: https://twitter.com/tscalliance; @KariRosbeck
Threads: https://www.threads.net/@tscalliance
Website: www.tscalliance.org
 
 
About the Host:
 
Michael Hingson is a New York Times best-selling author, international lecturer, and Chief Vision Officer for accessiBe. Michael, blind since birth, survived the 9/11 attacks with the help of his guide dog Roselle. This story is the subject of his best-selling book, Thunder Dog.
 
Michael gives over 100 presentations around the world each year speaking to influential groups such as Exxon Mobile, AT&T, Federal Express, Scripps College, Rutgers University, Children’s Hospital, and the American Red Cross just to name a few. He is Ambassador for the National Braille Literacy Campaign for the National Federation of the Blind and also serves as Ambassador for the American Humane Association’s 2012 Hero Dog Awards.
 
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Transcription Notes:
 
Michael Hingson ** 00:00
Access Cast and accessiBe Initiative presents Unstoppable Mindset. The podcast where inclusion, diversity and the unexpected meet. Hi, I'm Michael Hingson, Chief Vision Officer for accessiBe and the author of the number one New York Times bestselling book, Thunder dog, the story of a blind man, his guide dog and the triumph of trust. Thanks for joining me on my podcast as we explore our own blinding fears of inclusion unacceptance and our resistance to change. We will discover the idea that no matter the situation, or the people we encounter, our own fears, and prejudices often are our strongest barriers to moving forward. The unstoppable mindset podcast is sponsored by accessiBe, that's a c c e s s i capital B e. Visit www.accessibe.com to learn how you can make your website accessible for persons with disabilities. And to help make the internet fully inclusive by the year 2025. Glad you dropped by we're happy to meet you and to have you here with us.
. Well, welcome once again to another episode of unstoppable mindset where inclusion, diversity and the unexpected meet, and I bet we get to do a bunch of all of that today. Our guest is Kari Luther rosbeck, and Kari and I met through Sheldon Lewis from accessibe. Sheldon is great at finding folks for us to get to chat with. And when I started learning about Kari, one of the things that I kept reading was a term TSC, and I didn't know what TSC was. So when Kari and I first met, I asked her about TSC, and she said it stands for tubular sclerosis complex, which immediately struck a nerve with me, because I have a great nephew who has tubular sclerosis. And as it turns out, his parents have actually and had actually attended an event where Kari was and then just this past March or April or whenever, and you can correct me, Kari, but they went to another event, and my other niece and nephew, Tracy and Charlie, attended, as I just told, Kari, I'm very jealous they didn't let me come along, but that's okay. I stayed home and slept. But anyway, Kari, I want to welcome you to unstoppable mindset. It's really great that you're here, and I want to thank you for taking the time to be with us. It
 
Kari Luther Rosbeck ** 02:42
is such an honor. Michael and I love talking with your family, and it was so wonderful to have them with us at comedy for a cure this year. Well, it
 
Michael Hingson ** 02:53
it was really fun to hear about the event from them, and I'm glad that that they all enjoyed it. And of course, Nick is is a person who deserves all the attention and help all of us can give. He's had tubular sclerosis, been diagnosed with it for quite a while, and is actually, I think,