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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. https://michaelhingson.com https://www.facebook.com/michael.hingson.author.speaker/ https://twitter.com/mhingson https://www.youtube.com/user/mhingson https://www.linkedin.com/in/michaelhingson/ accessiBe Links https://accessibe.com/ https://www.youtube.com/c/accessiBe https://www.linkedin.com/company/accessibe/mycompany/ https://www.facebook.com/accessibe/ Thanks for listening! Thanks so much for listening to our podcast! If you enjoyed this episode and think that others could benefit from listening, please share it using the social media buttons on this page. Do you have some feedback or questions about this episode? Leave a comment in the section below! 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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, beating some odds, because some people said, Oh, he's not going to last very long, and he's continuing to do well. And just don't ever get him into a conversation about sports and the Dodgers, because he's a Dodger fan, okay, 03:24 as he should be. By the conversation. Michael Hingson ** 03:28 Well, he is a Dodger fan as he should be. I just want to point that out, yes, yes, for those of us here. Well, Nick, Nick probably Kari Luther Rosbeck ** 03:36 was, well, when Nick was diagnosed, we had a very different prognosis for TSC back then. Michael Hingson ** 03:45 Well, yeah, I know, and it's like everything with medicine, we're making a lot of advances. We're learning a lot, and of course, we're paying a lot of attention to these different kinds of issues. I mean, even blindness, we're paying a lot of attention to blindness, and we're slowly getting people it's a very slow process, but we're slowly getting people to recognize blindness isn't the problem. It's our attitudes about blindness that are the problems. And I think that's true with most things, and I think that if people really thought about Nick and and felt, well, he can't do much because of they would recognize he can do a whole lot more than they think he can, 100% which is really important. Well, let's start a little bit about you. And why don't you tell us about the early Kari growing up and all that and how we got where we are, well, thank Kari Luther Rosbeck ** 04:43 you for the opportunity to do that. My middle name is Lacher. That's also my maiden name. My dad and mom were in education, primarily. My dad also dabbled in some politics. We moved around. Quite a bit when I was a child, I think before seventh grade, or before I was 18, we knew 13 times so that really, you know, you become adaptable because you have to be and inclusive, because you have to be because you're in all of these new environments. From the time I was six years old, I wanted to be an actress. I wrote my own plays, I organized a neighborhood, I think, when I was seven, and we performed a play I wrote. And that's what my degree is in, in theater. And Michael, as you probably know, when I was 27 I had my first child, Noel, who unfortunately passed away from sudden infant death, and it completely changed the rest of my life. From that point forward, I really wanted to do something that impacted families, so they never had to experience the type of grief that I went through at a very somewhat young age. And then from from that point, I took all of the skills that I'd been using in the work life, not theater, because I lived in New York, and you have to work to live, so you could do theater before my then husband and I moved to Minneapolis, but I had always done fundraising. I had always done administration, so I just kind of naturally took in all of those skills, community and grassroots building. I went to work for the American Refugee Committee in Minneapolis, and then from there, worked at international service agencies, which is a workplace giving umbrella organization representing all of the premier international organizations. And my job there, as a regional director was to go into workplaces and give two or three minute presentations and convince people to give to international causes. My favorite was I was pregnant. I had a pregnancy kit, what they would give people in developing the developing world, where you would have a razor blade, a string, a plastic sheet, and that's how they delivered babies. And that was a really effective presentation, as you can imagine. I got to the TSC Alliance because my boss at international service agencies became the CEO of the TSC Alliance in early 2000s and he brought me over to start our volunteer outreach program, build our grassroots movement, and from there, I definitely got involved in fundraising. The admin side was interim CEO, and then CEO, Michael Hingson ** 07:55 well, gee, so so many questions. Why did you guys move so many times? Kari Luther Rosbeck ** 08:01 Well, my dad got his PhD and became dean of students at Arkadelphia State University, or Henderson State University in Arkadelphia, rather. And he did great, but he loved politics, and he had the opportunity to become the executive director of the Republican Party of Arkansas when it wasn't cool to be a Republican in Arkansas, and that really was his passion. And from there, he became a he led a congressional campaign for a candidate in Littleton, Colorado, and when that candidate didn't win, he realized that he really needed to have a more stable life for his family. So we moved to Knoxville, Illinois, and he became a vice president at a community college, and from that point forward, that was his his career. We moved to upstate New York. I'm leaving out a few moves just to make it simple. We moved to upstate New York my freshman year in college, where he became a President of Community College there, and then ultimately, he ended back in his hometown, in Mattoon, Charleston, Illinois, where he led the local community college until he retired, and the Student Union at Lakeland College is actually named after my Michael Hingson ** 09:30 father. Wow. So is he still with us today? He is not. Kari Luther Rosbeck ** 09:34 He passed away from idiopathic pulmonary fibrosis in 2017 Michael Hingson ** 09:38 Well, that's no fun. How about your mom? She is, she Kari Luther Rosbeck ** 09:43 still lives in that soon. Yep, she is the matriarch of our family. That's for sure. Michael Hingson ** 09:50 A lot of moves. Needless to say, I wonder what your father would say about politics today, it started to be different in 2016 and. 2017 but I wonder what he would think about politics in general. Today, I Kari Luther Rosbeck ** 10:04 am not sure. I have wondered that question a lot. The one thing my dad was always great at, though, was the ability to see balanced viewpoints, and it's something I always loved and respected about my father, and Michael Hingson ** 10:19 I think that's important. I think people really need to do more of that. And we just, we're not, we're not seeing that, which is really scary. We're not seeing it on so many levels, not just politics. But, you know, we don't get into politics much on unstoppable mindset, because, as I love to tell people, if we do that, I'm an equal opportunity abuser anyway, and and I, and I'm with Mark Twain. Congress is that grand old benevolent asylum for the helpless. So you know? Kari Luther Rosbeck ** 10:48 Well, I will say this. My dad taught me how to be an advocate from a very young age. Yeah, what it means to not be afraid to use your voice. That's the best thing we can get out of politics, that using your voice for the greater good is one of the most important things that you can do. The Michael Hingson ** 11:10 thing that I think people are forgetting today is they love to use their voice, but they don't love to use their ears. Yes, which is another thing, but I I hear what you're saying. I joined the National Federation of the Blind, which is the largest blindest consumer organization in the country, and I joined in 1972 when I was a senior in college, and learn from experts about being an advocate. And I think it's really important that we have advocacy. And the value of really good advocates is that they are able to look at all sides of an issue and really make intelligent decisions and also recognize when it's time to maybe change as things evolve in terms of views. And we just don't see any of that today. People say I'm an advocate. Yeah, well, without thinking about it, and without really looking at the options, and without looking at stands, it's just amazing how people, as I said, use their voices, but not their ears today. I agree. Yeah, it's, it's, it's a tough world, and it's, it's a challenge. I read an article about a year ago in the New York Times all about how we're losing the art of real conversation, which is why this podcast is so much fun, because we do get to converse. Kari Luther Rosbeck ** 12:36 That's right, I I'm so excited to be with you today. Michael Hingson ** 12:40 Well, so you got into nonprofit, in a sense, pretty early, and you've certainly been involved at reasonable levels for now, 23 years after September 11, I worked at Guide Dogs for the Blind for six and a half years, as well as being a public speaker. But loved working in the nonprofit sector, although I had a lot of fun with some of the nonprofit people, because what I would constantly advocate, if you will, is that development in the nonprofit world is really just no different than sales. Instead of selling and making a profit, in a sense, you're selling to secure donations, but it's still sales. And people would say, Oh no, it's totally different, because nonprofit is just totally different than what you do if you're working with a company and selling for a company. And I'm going, I'm not sure it's that different. Kari Luther Rosbeck ** 13:40 Well, what I think is that you're selling hope and right? It's all about relationships. But unlike widgets, we have a lot of different programs that have created such progress, hope and support for the tuberous sclerosis complex community. And I really enjoy talking about what those programs help make possible for people like your great nephew, Nick well Michael Hingson ** 14:12 and and it's important to do that. I The only thing I would say on selling widgets, as opposed to hope, is if you talk to Steve Jobs or Bill Gates, they would say that widgets very well could also be a mechanism to to move toward hope and dreams. And so again, I think it's just, it's it's all using the same techniques, but different things. I tell people now that as a keynote speaker, I think it's a whole lot more fun to sell life and hope and dreams than it is to sell computer hardware. Kari Luther Rosbeck ** 14:54 But you're right about computer hardware, and for instance, wearables that are. Really making a difference in some of the breakthroughs that we see today. So under percent correct. Michael Hingson ** 15:05 Well, tell us a little bit about the whole tubular sclerosis complex Alliance, the TSC Alliance, and you got started in it. And what was it like, if you will, back in the day, and it's not a great term, I'm telling you, I I'd love to to have fun with that, but what it used to be like, and what it is now, and what's happening, sure. Kari Luther Rosbeck ** 15:27 So when I started June 18, 2001 nearly 23 years ago, the organization had about seven employees. Today, we have 23 we in those days, we knew what the genes were in TSC, and soon after I came to work, we discovered how the TSC genes impact the underlying genetic pathway. That was awesome, because that led to some key clinical trials and ultimately an approved drug. What I say about the early days is we were we did a beautiful job of holding people's hands, offering them support, but there were no medications that really directly impacted TSC that were FDA approved, Michael Hingson ** 16:21 maybe it would help if we actually define what TSC is. Yes, of Kari Luther Rosbeck ** 16:25 course, let's start with that. Tuberous sclerosis complex is a rare genetic disorder that causes tumors to grow throughout the body, the brain, heart, kidney, liver, lungs. It is the leading genetic cause of epilepsy and one of the leading causes of autism. Epilepsy impacts about 85% of people with TSC autism, about 50% one in 6000 life first will have TSC. TSC impacts about 50,000 Americans and a million people worldwide, and it's variable. No two people are exactly the same, not even identical twins. So people can have mild cognitive impact. They might have moderate or severe. People can have mild cognitive impact, but at some point in their life, perhaps needing a lung transplant. TSC is progressive. So for women of childbearing age, lymph angiolio, myomatosis, or Lam can impact the lungs. We can see kidney growth of tumors in the kidneys that can impact quality of life. So it's variable, and some of our adults live independently. Others require more complex care. It's usually diagnosed in childhood and in infancy, either in utero, where you can see two or more heart tumors in a regular ultrasound. Sometimes you're diagnosed after birth, when a baby begins having seizures. Some people aren't diagnosed till they're teenagers with the appearance of angiofibromas or skin tumors on their face. And occasionally, people are diagnosed when they're adults. They have kids of their own, their children are diagnosed with TSC, and then they are subsequently diagnosed with TSC. So it runs the gamut. Michael Hingson ** 18:31 So it is something that very much is or can be genetic. It is genetic. Kari Luther Rosbeck ** 18:38 Yes, it's caused by mutations in one of two genes, TSC one or TSC two, on the ninth or 16th chromosome that controls cell growth and proliferation, which is why you see the appearance of non malignant tumors. And that is what impacts all the organ systems. Yeah, Michael Hingson ** 19:00 and it is not a fun thing, needless to say, to be around or to have, and it's not something that we have control over. Nick, I know does live with his parents. I don't know whether Nick will ever be able to live independently. He does have seizures and sometimes, and it's not predictable, although he's doing a little bit better job of controlling them with medication, but he'll probably always live with someone. But what a wonderful person to have around. Yes, Kari Luther Rosbeck ** 19:35 he is definitely enjoyable. And that's, I mean, that's the thing about TSC. We have we have independent adults. We have kids, we have semi dependent adults. We have dependent adults. The one thing about our community and our organization is this is a home for everybody. Michael Hingson ** 19:58 So when did the. See Alliance actually first begin Kari Luther Rosbeck ** 20:01 1974 so it started with four moms around a kitchen table in Southern California, and two of those four moms are still in touch with the TSC Alliance. I talked to two of our Founding Moms quite frequently. They are very inspirational. They had this tremendous foresight to think about what the community needed or what they would need in the future. So our organization, the TSC Alliance, we actually have a new vision statement as of this year. So our vision statement is the TSC Alliance wants to create a future where everyone affected by TSC can live their fullest lives, and our mission statement is to improve quality of life for everyone affected by tuberous sclerosis complex by catalyzing new treatments, driving research toward a cure and expanding access to lifelong support. What so some of the ways that that we do this, as you know, is to fund and drive research, to empower and support our community, to raise awareness of TSC, because we want to provide the tools and resources and support for those living with TSC, both individuals and caregivers. We want to make sure that as an organization, we are pushing research forward by a research platform that we've helped create through the years, and we want to make sure that people are diagnosed early and receive appropriate care. So it's really important to us to raise awareness in the general public, but also among the professional community. Michael Hingson ** 21:52 So this is the 50th anniversary of the TSC Alliance. Yes, it is. And I would dare say, based on what you're talking about, there's a lot to celebrate. Kari Luther Rosbeck ** 22:04 We have so much to celebrate. Michael, there's been so many accomplishments over the years, from the creation of our professional advisory board early on that provided guidance to the organization to today, we have three FDA approved drugs specifically to treat TSC as an organization in 2006 we started the very first natural history database anywhere in the world that still exists today, with over 2700 participants, and that allows us to really understand how TSC progresses through a lifetime, and then we, as an organization, in partnership with a group of our TSC clinics, helped with the first preventative clinical trial for epilepsy in the United States, and that was really to look at Babies with TSC to treat them before the first seizure, to see if we can prevent or delay epilepsy. Michael Hingson ** 23:07 So So tell me a little bit about the the three different drugs that are available. What? What do they do? Without getting too technical, how do they work, and so on, because, obviously, the tumors are there. And so what do the drugs do to address all of that Kari Luther Rosbeck ** 23:24 great question, the first approved drug for TSC everolimus is an mTOR inhibitor, mammalian target of rapamycin. So if you remember I talked about the two TSC genes working as a complex to control the genetic underlying genetic pathway. Well, that underlying genetic pathway is mTOR, and there happened to be a class of drugs that was developed to help with organ transplant and anti rejection. Ever roll. This is a synthetic of rapamycin that was found on rap a rap the islands, rap immune island. So what that particular drug has been approved for, and how it works in TSC is to shrink certain types of brain tumors to shrink tumors in the kidneys, and it's also used as adaptive therapy for seizures associated with TSD. So what we know is it is extremely effective, but if you go off the medication, the tumors will grow back. So it's not a cure, but it's moving in the right direction, right second drug that was approved is the first FDA cannabinoid drug, Epidiolex, and that treats seizures associated with TSC. The third approved drug is a topical rapamy. So it treats those skin tumors on the face. I Michael Hingson ** 25:04 don't know. It's really interesting. Medical science comes up with all these terms that are tongue twisters. How do they do that? You're 100% correct. Oh, it's a fun world. What's on the horizon, what kinds of things are coming that will kind of either enhance what they do or other sorts of medications? Yeah, Kari Luther Rosbeck ** 25:28 thanks for asking that. So I think for us, in 2019 we put together a really aggressive research, research business plan, and our goal with this was to ultimately the vision change the course of TSC, and so we have a research platform that really helps accelerate drug development. So we fund research grants or young investigators to keep them interested in the field and to generate new ideas. We have a pre clinical consortium where we work with a contract research organization. We've licensed different mouse models that can try drugs for both epilepsy and tumor growth and behaviors, and so that is really built a pipeline of new potential therapies for TSC we also have this clinical research consortium that we work with. We have 74 TSC clinics across the country, of which 17 are centers of excellence, and we're working with our TSC clinics and centers of excellence to when drugs come out of the pre clinical or when companies come to us and they want to institute clinical trials, we will work with them to be in touch with our clinics, to educate our community about what clinical trials are out there, so they know what questions to ask or how to appropriately weigh risk benefit, so that's a really important part of our platform. We also, I mentioned earlier, a natural history database to help us understand how TSC progresses through a lifetime, but also a bio sample repository, so we'll understand why TSC is so different person to person. So with all of those tools working together, what we want to do is ultimately determine how to predict an individual's risk for the many manifestations of TSC so if we knew who was at risk, say, for epilepsy, and we could intervene to delay or prevent epilepsy. Could we do the same with kidney tumors? So that's what I mean about predicting and prevention. We would like to develop biomarkers to help accelerate outcome measures and clinical trials. We would love to have an intervention early on. Remember, I said that we helped start the first preventative clinical trial for epilepsy. You need an intervention to get on the newborn screening panel. If we could be on the newborn screening panel and identify babies early, that is the greatest way to change the course of the disease. Of course, we obviously want to test more compounds in our pre clinical consortium to make sure that we are building that pipeline for new and better drugs in the future, and we definitely want to develop patient reported outcomes. So how does this disease impact quality of life for individuals and families living with it, so that we'll know in the future, if there are different potential treatments, does it impact or improve their quality of life? And the FDA looks at patient reported outcomes quite seriously, so we want to build that for future clinical trials and clinical studies. Finally, one of the biggest unmet needs in TSC is what we call TSC associated neuropsychiatric disorders, or taint This is an umbrella term for brain dysfunction that includes everything from sleep problems to depression, anxiety, aggressive behavior, executive functioning, how people learn. So it is definitely an umbrella term, and almost everybody is impacted by tanned in some way that are living with TSC. So we want to better understand who might be at risk for which parts of tan so that we can intervene and improve quality of life. Michael Hingson ** 29:55 Something that comes to mind we hear people talking. Think a fair amount today about gene therapy and how all of that might work to cure various diseases and so on. Is there room for that in Tse, since especially it's caused by two specific genes? Kari Luther Rosbeck ** 30:14 Great question. We actually are working with some gene therapy companies in our pre clinical consortium looking to see if we can intervene that way. Michael Hingson ** 30:26 It's a few years off, yeah, I can imagine, but it would be an interest if, if it truly can be done, since you're clearly able to tell that there are specific genes that are that are causing this. It's an interesting concept, given the state of science today, to think about whether that could lead to, even if it's not immediate, but later, cures for TSC and other such things, and Kari Luther Rosbeck ** 30:57 we might start with organ specific gene therapy. For instance, if we had gene therapy early on in the brain, again, thinking about preventing seizures from ever developing, if we were able to implement gene therapy in the kidneys so or lungs so women never develop lamb, that would be a huge breakthrough. Yeah. So thinking about how that might work and how that could impact our community is tremendous, Michael Hingson ** 31:28 I would think so. And I would think if they are able to do some work in that regard, it would be very revolutionary. And obviously, the more we learn about gene therapy overall, the more it will help with what medical science can do for TSC as well. That's right. So what does the Alliance do for families and individuals? What kinds of specific things do you all do? Kari Luther Rosbeck ** 31:57 Yeah, we have 32:00 developed 14 Kari Luther Rosbeck ** 32:01 community regions across the country where we work with our volunteers. So they'll in their regions, host community educational meetings, walks, where they bring the community together, which is hugely important offer peer to peer support. So that is on a regional level. On our team, we have support navigators, so people that are available to take calls, emails, texts to really help when people either receive a new diagnosis, will spend a lot of time making sure they get to the right clinics, resources, support systems, or when a new manifestation arises, or if people are having some access to medication or access to care issues, we have a TSC navigator so that is a proactive online tool that people can log into and that will really take them through the journey in a way they want to gain information. So it's really written in in small bites, so that if people want more information, they can dive deeper. That's hugely important for individuals impacted. We have regular webinars, regional conferences, and every four years we hold a World Conference. Well, we will bring in experts from all over the world to cover the many manifestations of TSC so people are informed to make the best decisions for them and their families. They'll also talk about new clinical trials or new research on the horizon, or they're talk about social service tools that are really important for living or guardianship or financial planning, so those things that aren't just medical, but really impact people's lives. Michael Hingson ** 33:57 So today, what, what do you think? Or how would you describe, sort of the social attitude toward TSC and people with TSC, or is it, is it more manifested in Well, this guy has seizures and so on, so TSC doesn't directly tend to be the thing that society views. Kari Luther Rosbeck ** 34:22 That's a great question. And because TSC is so variable, I'm going to say to you, it's different person to person. One of the things we did a few years ago was create these little business cards that described what TSC was. So if somebody's out at a restaurant, they might hand it to their waiter or waitress to say, We want you to know that our for instance, our child has TSC and so you understand what you might see as you wait on us. For example, I still think that for those that are more severely in. Acted. I talked about tanned and some folks with more severe behaviors. You know, our society, it's attitude, right? You talked about that in your presentation of diversity to inclusion, we need to be much more understanding when a family is trying to handle a seizure or or behaviors and not pass judgment on that family, let the family handle that situation. So I would just say it's individual to individual, but one of the most amazing experiences, as is at our world conferences, where everybody can just be. And everybody understands that TSC is variable. And you might have a child over here with a seizure dog. You might have an adult group in one corner talking and dancing, but everybody comes together, yeah, Michael Hingson ** 35:58 yeah. And that's really important to do, and that's you raise a really good point. Obviously, dogs are learning to be better at seizure detection. And I was going to ask about that, because I assume that that certainly can play into helping people who have seizures, who have TSC. Kari Luther Rosbeck ** 36:18 That is absolutely correct earlier. You asked about what it was like early on, we didn't have a lot of seizure dogs at our early conferences. That's something that really has been happening after, say, 2010 we've definitely seen a lot more seizure dogs be trained and really be helpful to families. Michael Hingson ** 36:39 Yeah, well, and we have come so far in terms of training dogs to be able to detect seizures and detect so many things. One of my favorite stories, and it's not a seizure detection as such, but one of my favorite stories, is about a Portuguese water dog who was a show dog, but he or she, rather, was also trained to do cancer detection. And the owner, who was very competitive in doing show dog type things, as well as had started a company or a facility to deal with cancer detection, took his dog to the show, to a dog show. And every time the dog got near this one judge, it just laid down. It would not perform, it would not work. And so needless to say, this national champion didn't do very well at that show. And the guy couldn't figure out why. And he got home, and he suddenly realized, oh my gosh, I had taught the dog to lay down whenever it detected cancer, because you don't want to do something dramatic, right? And so he called the woman who was the judge, and he said, Do you have cancer? And she says, No, I don't have anything like that. Then he said, Well, you might go check that out, because and he told her, this was like a Monday when he called her, and Friday she called him back, and she said, I took your advice. And it turns out I have early stage breast cancer. We caught it in time, and it's all because of your dog. Kari Luther Rosbeck ** 38:04 Oh my gosh, Michael, what an amazing story Michael Hingson ** 38:10 it is. You know, we we really underestimate our dogs. I know that the first diabetic dog was a dog who who kind of learned it on his own. His person had occasional insulin reactions, and the dog became agitated. And finally, the guy realized, oh my gosh, this dog knows what I'm going to have an insulin reaction. And that led to dogs for diabetics, which is another, of course, sort of same thing that the dogs really can learn to do so many things today. Kari Luther Rosbeck ** 38:44 Yes, yes, they can. Michael Hingson ** 38:48 So there's always room for dogs. So we talked, I think, in sort of terms, about your the the whole research platform that you all have developed tell us more about the research platform and what it is and where it's going. Kari Luther Rosbeck ** 39:06 Well, I definitely talked about all of the tools within our research platform. I think we're certainly taking a deeper dive into all of the tools that that we've developed, when we think about, for instance, our bio sample repository, one of the things we're doing right now is whole genome sequencing. Why? Because we're hoping with whole genome sequencing, we'll understand if there are modifier genes. Are there other things at work that makes some people more severe than other others, and then ultimately, what we'd love to learn is what medications might work best on each individual or personalized medicine, so often in TSC with seizure medications, people end up on a cocktail. We would rather avoid that, right? Wouldn't it be nice to get the medication right the first time? That's really what we are hoping for with our clinical research consortium. Right now, we're doing a couple of quality improvement studies, so one of them is around suit up or sudden, unexpected death from epilepsy, and really understanding the conversations that happen between a physician and a patient or a caregiver, and why aren't those conversations happening in TSC or when are they happening? Because we want to create change so that parents know the risks, or individuals understand the risks, and can they change their behavior to mitigate some of those risks? The other thing that we are doing is we started a reproductive perinatal Health Initiative. This came out of our 2002 world conference because we heard from a bunch of adults that this was a gap for TSC. So TSC is variable. We have some independent adults that may want to start a family someday, but we have no no consensus guide guidance, to guide them in making those decisions. So we put together a group of experts in maternal fetal health, pulmonary nephrology, imaging genetics, to come together to first talk about what are risk stratifications, both for women that are may experiences complications in pregnancy. What are those? What's a risk stratification for each individual? Also, how do we handle perinatal health? How do we care for fetuses of women with TSC, or fetuses where they have been diagnosed with TSC, and what are those recommendations and steps? So that's a real focus for us at our organization, really filling the gaps where those exist. So that's a couple of the things that that I would mention. Michael Hingson ** 42:16 An interesting question that comes to mind, do you see prejudices or misconceptions that cause difficulties within medical science. And I ask that because I know from a blindness standpoint, so often, when a person goes into an ophthalmologist because they're having eye problems, they go in and the doctor will say, eventually after diagnosis, well, you have retinitis pigmentosa, you're going to go blind. There's nothing I can do, and literally, just walk out of the room without ever dealing with the fact that this person can still be a very normal person. Do you see any of that kind of stuff in the world of TSC so Kari Luther Rosbeck ** 42:56 early on, less today, but we still hear about it when people are handed the diagnosis of TSC, they it could be very cold. Physicians would say, your child will never walk, they'll never talk, they'll never live a normal life. That's horrible, like you're taking away that hope. And that may not be the case for each individual with TSC, I think some of our families, when their infants begin to have a devastating type of seizure called infantile spasms that can look just like a head nod, sometimes they are misconstrued for indigestion or startle reflex, and They try to get care for their baby, they're told that they're just being paranoid and crazy. It's nothing, but the it's up to the parents right to continue to advocate, because they know something is not right and that that is the right course of action. And then for adults, I think sometimes our adults living with TSC really struggle with adequate care. We've done a really good job of pediatric care specifically for TSC, but as a country, we could do a lot more for those with developmental disabilities, including TSC and providing adequate transition from adult care, these are the places that I see prejudice or roadblocks put up for our families. Michael Hingson ** 44:33 How do you teach or what do you do to teach parents and adults, especially about being stronger advocates. Kari Luther Rosbeck ** 44:43 Well, first of all, we tell them to trust their instincts and trust their voice and to not give up if you're hitting a roadblock. One place call us. Maybe there are other other clinical care that we can provide for you. Yeah. If you're having an issue at work, it's really important that you get the right support to advocate for yourself, but to never, ever give up, ever give up. Michael Hingson ** 45:11 Yeah, that's really, of course, the important part, because ultimately, and I think it's true for most all of us, we know ourselves better than anyone else. And as parents, we know our children better than anyone else, and certainly should never give up and work very hard to be strong advocates to support what their needs are and support them to grow and advance. Kari Luther Rosbeck ** 45:36 That's exactly correct, Michael Hingson ** 45:41 and it needs to happen a whole lot more, because all too often, I can imagine hearing people say, well, it's nothing, it's just your it's your imagination. Well, no, it's not, you know, but we see way too much of that kind of thing happening in the world. So it's great that that you're able to do so much. What about in the in the professional world, or in just dealing with people and their lives? What? What kind of things are you able to do to, let's say, help support somebody who wants to go out and get a job? Kari Luther Rosbeck ** 46:21 Sure? We point them to local resources that might be an expert in that. We also have navigation guides that might help them, that are a supplemental resource to our TSC navigator. We have adult topic calls and adult open forums so that they might also get guidance and advice from their peers that have walked that journey. So those are some of the resources that we will help people who want to get a job Michael Hingson ** 46:55 do Centers for Independent Living help. Kari Luther Rosbeck ** 47:00 Are you familiar with those? No, I'm not familiar. Sorry, I'm not familiar. So the Michael Hingson ** 47:04 CIL system is a system of independent living centers. It really started, I don't know, but I think in Berkeley, it's centers that teach and advocate for the whole concept of being able to live independently, and deals a lot with physical disabilities, and I'm not sure how much the developmental disability world interacts in the CIL it may be a lot more of a physical thing than anything else. Kari Luther Rosbeck ** 47:32 Well, always great to have new resources that we can share with our community. It's worth Michael Hingson ** 47:38 exploring Absolutely, because it could very well lead to something that would be helpful, not sure, but it's always worth exploring. The arc is Kari Luther Rosbeck ** 47:47 another organization I was gonna ask about that frequently. Yes, we've, we've had a partnership with the arc in the past. Many of our community regions obviously work with local arc chapters. It is a partnership that we truly value, and they have a ton of resources that are available for individuals, seeking jobs, seeking Independent Living, seeking so or housing for families. So we don't need to replicate what somebody is already doing. Well, we will partner with that organization, Michael Hingson ** 48:25 and that makes sense. There's no sense in replicating. It's all about collaborating, which makes a lot more sense to do. Anyway, Kari Luther Rosbeck ** 48:33 exactly we agree. Michael Hingson ** 48:36 Well, so what are so, what are your your sort of long term goals from here? Oh, Kari Luther Rosbeck ** 48:45 long term goals from here? Well, we want to continue to improve quality of life for everyone. We want to make sure that there is adequate transition between childhood and adult in terms of medical care, independent living, or housing or schooling, or whatever that transition may employ, we really want to make sure that we continue the pipeline of new treatments. We want to drive towards a cure. We want to support and empower every family living with TSC. One of the things that we've really been able to do because of advocacy, is to grow the TSC research program at the Department of Defense. So this is a congressionally directed medical research program. There's been an appropriation for TSC since fiscal year, 2002 and cumulatively, 221 million has been appropriated for TSC research. We want to continue to grow that. But on a state level, we've also had some success in growing state funding for. TST clinics in particular states, and for TSC research at those institutes. So over 5.7 5 million have been advocated, have been appropriated from the states of Maryland and Missouri and Michigan and Alabama. So very excited about continuing to grow that that program, as I mentioned, I think getting on the newborn screening panel would be a game changer for TSC, complete game changer. And we want to continue to grow our advocates and grow those that are available as leaders in their communities to offer support to others. Michael Hingson ** 50:39 So the funding comes through the Department of Defense. Why is that? Kari Luther Rosbeck ** 50:44 It is a program that is high risk, high reward. You have to have some military relevance. So so for TSC, obviously, our connection to epilepsy and our mass models that are used for developing epilepsy medications, those mass models can also be used to look at traumatic brain injury. So that's a connection. It's high risk, high reward. So understanding the underlying biology of TSC and finding that genetic pathway that I mentioned was one of the hallmark achievements early on of this program. So it's, it's, it is so amazing. The early gene therapy work for TSC started at the TSC research program at the Department of Defense. Michael Hingson ** 51:33 And I gather you're probably getting a lot of really good support from DOD. So Kari Luther Rosbeck ** 51:38 it doesn't come to the TSC Alliance, we advocate to make that funding available to researchers around the country. So we think of that as part of our mission for driving research. But we don't see a dime of that. Those dollars, they all go through Fort Detrick and through the Department of the Army, right? The other cool thing, though, Michael is we nominate consumer reviewers, so people that help advocate for these funds also sometimes get a seat at the table to say what research would be meaningful for their lives as a consumer. And that is a really cool, unique thing that happens. Michael Hingson ** 52:21 Yeah, well, and I was asking about support, I was thinking more of their they're perfectly willing and pleased to be a part of this, and are really open to helping and really contributing to the research, because I would think it would help all the way around 100% Kari Luther Rosbeck ** 52:40 and the one thing is the TSC Alliance, the DOD and NIH. We all work together so that we're not duplicative. But we have, there was a research strategic plan that was developed out of a workshop at NIH that we all follow as kind of our guiding principle. We all do different things, and we all complement each other. So out of that NIH plan, for instance, a bio sample repository and preclinical consortium was recommended, and recommended that the TSC alliance is the patient advocacy group, be the one that started that and continues to make sure that those resources continue. That's just an example. Obviously, DOD does high risk, high reward. And NIH, you know, the prevent trial that I mentioned, the first preventative trial for epilepsy in United States, was funded by the National Institute of Neurological Disorders and Stroke. We helped educate the community so that people would want to participate. Michael Hingson ** 53:46 Well, it's, I think, important and relevant to ask, how can people get involved? What can the rest of us all do? Kari Luther Rosbeck ** 53:54 Oh my gosh, I'm so glad you asked. Well, please go to TSC alliance.org, learn more about the organization. Become a volunteer. Help us. Help us with our walks, help us with our conferences. You can certainly get involved. If you're an individual with TSC and you want to get connected through social media, you can go to Facebook, Instagram, LinkedIn, YouTube, even Tiktok at the SC Alliance, we have very active discussion groups Michael that offer peer to peer support. 24/7 especially on Facebook, it is a private group, and those group of individuals and families have been so supportive for anyone walking this journey, you can call us at 1-800-225-6872, if you need support, you can ask for a support navigator. If you're interested in helping us with fundraising or making a donation, you can ask for our development department. If you want to volunteer, ask for. Community programs, we want all takers, and we're always also happy to talk with any organization, any nonprofit, that's wanting to pull together their programs, seek advice or work as a partner, Michael Hingson ** 55:15 and what's the phone number? Again? 1-800-225-6872, Michael Hingson ** 55:24 and the website is TSC Kari Luther Rosbeck ** 55:26 alliance.org, Michael Hingson ** 55:29 cool. Well, I've asked lots of questions. Have I left anything out? Any other things that you think we ought to cover? I Kari Luther Rosbeck ** 55:37 think you did a great job. I would just say if anybody wants to join us at our 50th Anniversary Gala, we'd love to have you. TSD alliance.org, backslash 50 Gala. We will be celebrating october 25 at ciprianis in New York City, and we'd love to have you with us. Ooh, that sounds like it'd be fun. I know you gotta get your family to bring you this time. Well, yeah, Michael Hingson ** 56:07 if they're going to come, they should, should take me. I'm trying to think, I don't know whether I'll be anywhere near there at the time, but my schedule changes all the time, so it's sort of like everything else you never know. But I will keep that in mind, because it would be fun to come and get to meet you in person. I would love that. Well, I want to thank you for being here with us. This has been, needless to say, very educational and very enjoyable. And of course, as you know, I have the personal stake of a great nephew, but just being able to talk about it, to hear the progress that's being made as, I think, really crucial and really important to be able to let people be aware of and I hope that people who do hear this will get involved, will at least learn more about it. Have you written any books or anything? I have Kari Luther Rosbeck ** 56:57 not written any books. Oh, we got to get you to work. That's right, you're an inspiration. Michael Hingson ** 57:04 Well, something to work on. You should? You should write a book about it all. That'd be a new project. It's not that you don't have enough to do, though. That's Kari Luther Rosbeck ** 57:13 right. Michael, I'm too busy taking care of our community right now, but when I retire, that might be something I think about. Well, there Michael Hingson ** 57:21 you go. Well, I want to thank you again for being here. This has been, I will say, enjoyable, but it's been most educational. I've learned a lot, and I appreciate your time, and I hope that, as I said, everyone else has as well. So I want to thank you for being here, and anytime in the future you want to come back and talk some more about what's going on and tell us about other new, revolutionary changes and so on. You are always welcome. Kari Luther Rosbeck ** 57:46 Thank you. Michael, I'd love to come back. Well, thank Michael Hingson ** 57:50 you again, and let's do it anytime you'd like, Okay, you got it. **Michael Hingson ** 58:01 You have been listening to the Unstoppable Mindset podcast. Thanks for dropping by. I hope that you'll join us again next week, and in future weeks for upcoming episodes. 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