Podcasts about neurological disorders

When someone we know or love starts to develop psychological issues, we don't often associate it with a form of dementia. However, this trait is one of the most common signs of frontotemporal dementia (FTD) — the most common neurodegenerative disease in people under the age of 65. In his new book, Mysteries of the Social Brain: Understanding Human Behavior Through Science, Dr. Bruce Miller highlights his experiences observing people with FTD and what they have taught him about what he calls the "social brain."Dr. Bruce Miller has been observing people with FTD for decades in the Memory and Aging Center at the University of San Francisco, where he is also Professor of Neurology and the Founding Director of the Global Brain Health Institute. He shares key insights on how to keep our "social brain" healthy and how it can even unlock our creative potential.

In this episode of the Heart podcast, Digital Media Editor, Professor James Rudd, is joined by Dr Jan Scheitz from Charité University Hospital in Berlin. They discuss how neurological events such as stroke can lead to cardiovascular events and what we can do about it. If you enjoy the show, please leave us a positive review wherever you get your podcasts. It helps us to reach more people - thanks! Link to published paper: https://heart.bmj.com/content/111/3/99?rss=1

Tonight, we are highlighting the topic of strokes with Dr. Clinton B. Wright, Vascular Neurologist and Associate Director at the National Institute of Neurological Disorders and Stroke as well as putting the 6th Annual Rebel Jam front & center with my friend, Marvin Leathers, as we work to help two young people, Karston Cook & Oaklee Spiller, as they face major health battles.

A 70-year-old client fills in an online intake form, saying she has myasthenia gravis, hypertension, and hypothyroidism. She only takes Synthroid, and says her hypothyroidism and hypertension are well controlled. She has low back pain and muscle soreness. At first glance, this seems fairly simple. MG does not appear to be a major factor for her, because she is not controlling it with medication. But a closer look reveals some possible tangles between MG, hypothyroidism, and some cautions about hypertension drugs. Join me as I completely overthink this situation, it will be fun!   Resources:   Barnes, S. (2023) Massage is not just a luxury for those of us with myasthenia gravis | Myasthenia Gravis News. Available at: https://myastheniagravisnews.com/columns/massage-is-not-just-luxury-those-us-with-myasthenia-gravis/ (Accessed: 16 April 2025).   Myasthenia Gravis (no date a) Physiopedia. Available at: https://www.physio-pedia.com/Myasthenia_Gravis (Accessed: 16 April 2025).   Myasthenia Gravis (no date b). National Library of Medicine. Available at: https://medlineplus.gov/myastheniagravis.html (Accessed: 16 April 2025).   Myasthenia Gravis | National Institute of Neurological Disorders and Stroke (no date). Available at: https://www.ninds.nih.gov/health-information/disorders/myasthenia-gravis (Accessed: 16 April 2025).   Myasthenia gravis - causes, symptoms, treatment, pathology (2016). Available at: https://www.youtube.com/watch?v=bYGxGdu9MsQ (Accessed: 16 April 2025).   ‘Myasthenia Gravis: Practice Essentials, Background, Anatomy' (2024). Available at: https://emedicine.medscape.com/article/1171206-overview (Accessed: 16 April 2025).   Myasthenia Gravis: What Is It? (no date) Cleveland Clinic. Available at: https://my.clevelandclinic.org/health/diseases/17252-myasthenia-gravis-mg (Accessed: 16 April 2025).   Sheikh, S. et al. (2021) ‘Drugs That Induce or Cause Deterioration of Myasthenia Gravis: An Update', Journal of Clinical Medicine, 10(7), p. 1537. Available at: https://doi.org/10.3390/jcm10071537.     Host Bio:                    Ruth Werner is a former massage therapist, a writer, and an NCBTMB-approved continuing education provider. She wrote A Massage Therapist's Guide to Pathology, now in its seventh edition, which is used in massage schools worldwide. Werner is also a long-time Massage & Bodywork columnist, most notably of the Pathology Perspectives column. Werner is also ABMP's partner on Pocket Pathology, a web-based app and quick reference program that puts key information for nearly 200 common pathologies at your fingertips. Werner's books are available at www.booksofdiscovery.com. And more information about her is available at www.ruthwerner.com.      About our Sponsors:   Anatomy Trains: www.anatomytrains.com    American Massage Conference: www.massagetherapymedia/conferences   Earthlite: www.earthlite.com   Anatomy Trains is a global leader in online anatomy education and also provides in-classroom certification programs for structural integration in the US, Canada, Australia, Europe, Japan, and China, as well as fresh-tissue cadaver dissection labs and weekend courses. The work of Anatomy Trains originated with founder Tom Myers, who mapped the human body into 13 myofascial meridians in his original book, currently in its fourth edition and translated into 12 languages. The principles of Anatomy Trains are used by osteopaths, physical therapists, bodyworkers, massage therapists, personal trainers, yoga, Pilates, Gyrotonics, and other body-minded manual therapists and movement professionals. Anatomy Trains inspires these practitioners to work with holistic anatomy in treating system-wide patterns to provide improved client outcomes in terms of structure and function.                      Website: anatomytrains.com                        Email: info@anatomytrains.com             Facebook: facebook.com/AnatomyTrains                       Instagram: www.instagram.com/anatomytrainsofficial   YouTube: https://www.youtube.com/channel/UC2g6TOEFrX4b-CigknssKHA      American Massage Conference Get ready to immerse yourself in the excitement as the American Massage Conference (AMC) arrives to Disney Springs near Orlando, Florida (May 16th-18th, 2025)! With a legacy of 17 successful years in Ontario, Canada, this premier event, proudly hosted by ONE Concept Conferences and expertly produced by Massage Therapy Media (MTM), boasts a lineup of presenters from across the nation and around the globe. The American Massage Conference began in Atlanta in 2011 and has been hosted through the years in San Diego, Chicago, and Virginia Beach. The conference provides educational opportunities with engaging one-, two-, three- and four-hour class formats, networking opportunities, masterminds, MTM Talks, demonstrations, and an extensive exhibitor tradeshow.   Mark your calendars for an unforgettable experience filled with education, networking, and the celebration of massage therapy excellence! ABMP members receive a special discount to attend this in-person conference—log in to your ABMP account to access the discount code and register today. Website: https://www.massagetherapymedia.com/conferences   Earthlite Unlock an exclusive 20 percent discount on all Earthlite products, from portable tables and chairs to professional sheets and oils. Visit earthlite.com, create an account, and enter your ABMP member ID during registration. Plus, enjoy free ground shipping on orders over $75 and a flat rate of $395 for stationary or electric lift tables. (Prices subject to change at any time.) Significant savings on everything you need to enhance your practice. We are proud to assist you as the “World's No. 1 Brand in Massage!”   Sign-up page: https://www.earthlite.com/customer/account/login/referer/aHR0cHM6Ly93d3cuZWFydGhsaXRlLmNvbS8~/  

In this episode we speak with Dr. Robert Melillo about childhood neurological diseases through the lens of epigenetics and integrative medicine. Dr. Robert Melillo is a world-renowned expert in brain health, specializing in childhood and adult neurological disorders. A clinician, professor, brain researcher, and bestselling author of "Disconnected Kids," he focuses on ADHD, autism, OCD, tics, anxiety, and other developmental issues. Dr. Melillo is dedicated to bridging brain function, behavior, and physical health. His innovative multimodal approach, The Melillo Method, has transformed thousands of lives. Join us as we explore his groundbreaking work and unique insights into the brain. Learning Points: 1. Are the foundational problems in ADHD, autism, and other neurological issues in the gut or the brain? 2. Why do parents need to be cognisant of childhood milestones to identify key stages of brain development? 3. Why is it important to incorporate an integrative plan to address neurological issues? Social Media: Website: https://www.drrobertmelillo.com/ LinkedIn: https://www.linkedin.com/in/robert-melillo-a287b618b/ Twitter/X: https://twitter.com/DrRobMelillo Facebook: https://www.facebook.com/DrRobertMelillo/ Instagram: https://www.instagram.com/DrRobertMelillo YouTube: https://www.youtube.com/@drrobertmelillo

In this episode, I explore 10 disorders that manifest during sleep, or are considered sleep disorders. These range from the more familiar REM sleep behaviour disorder, to the lesser-known exploding head syndrome.

This episode covers:In this episode, we discuss the connection between digestive issues and brain development in children, how technology overstimulates children's brains and what to do about it, how environmental and lifestyle factors significantly influence neurodevelopmental disorders, and so much more.One of the most respected specialists in childhood neurological disorders in America, Dr. Robert Melillo has been helping children overcome learning disabilities for over 30 years. His areas of expertise include: autism spectrum disorders, PDD/NOS, ADD/ADHD, OCD, dyslexia, Asperger's, Tourette's, bipolar disorder, and other mental, attention, behavioral and learning disorders. He is also an expert in diet, nutrition and neuroimmune disorders in children and adults.As a clinician for 30 years, a university professor, brain researcher, best selling author, radio and TV host, his cutting-edge research and success with over a thousand children in his private program are what led to the creation of Brain Balance Achievement Centers. Dr. Melillo has a private practice now that helps adults and children with various learning disabilities. He is focused on addressing the primary issue in most learning disabilities and behavioral disorders which is known as a functional disconnection. Since he introduced this concept, functional disconnection has become one of the leading theories in the world related to Autism, ADHD, Dyslexia and more. This work is leading the way toward understanding the underlying nature of these disorders and their causes.Links mentioned during this episode:Dr. Melillo's Website: https://www.drrobertmelillo.com/Dr. Melillo's Book Disconnected Kids: https://amzn.to/4gWSr7GDr. Melillo's Podcast: https://podcasts.apple.com/us/podcast/melillo-method-podcast-everything-brain/id1739403876Dr. Melillo's Instagram: https://www.instagram.com/DrRobertMelilloFree Initial Consultation with Dr. Megan: https://p.bttr.to/3a9lfYkLyons' Share Instagram: www.instagram.com/thelyonsshareJoin Megan's Newsletter: www.thelyonsshare.org/newsletter

Just a couple of weeks ago, 1,800 scientists, clinicians, postdoctoral fellows, and medical residents gathered in West Palm Beach, Florida, for the Americas Committee for Treatment and Research in Multiple Sclerosis annual meeting, better known as the ACTRIMS Forum. Dr. Daniel Reich is a neurologist and neuroradiologist. He is the Director of the Translational Neuroradiology Section at the NIH National Institute of Neurological Disorders and Stroke. In his clinical practice, Dr. Reich cares for people living with MS and other neurological diseases, and he leads several clinical trials focused on multiple sclerosis. At the ACTRIMS Forum, we talked with Dr. Reich about myelin repair, how improvements in imaging have impacted diagnosing and treating MS, and what he sees in MS research today that has him excited. We have a lot to talk about! Are you ready for RealTalk MS??! SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/actrims05 ADD YOUR VOICE TO THE CONVERSATION I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts! Email: jon@realtalkms.com Phone: (310) 526-2283 And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com RealTalk MS on YouTube https://www.youtube.com/@RealTalkMS Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200 Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk Give RealTalk MS a rating and review http://www.realtalkms.com/review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Bonus Episode Guest: Dr. Daniel Reich Privacy Policy

Welcome to season 6 of Hope for the Agora Podcast.Karen Kleine Deters shares her story of journeying with FND -- Functional Neurologic Disorder.Functional neurologic disorder (FND) refers to a neurological condition caused by changes in how brain networks work, rather than changes in the structure of the brain itself, as seen in many other neurological disorders. Physical symptoms of FND are genuine but cannot be explained by changes in the brain structure. The exact cause of FND is unknown.Resources:National Institute of Neurological Disorders and Stroke (NINDS). Functional Neurological Disorder Information Page. https://www.ninds.nih.gov/health-information/disorders/functional-neurological-disorderStone, J., Carson, A., & Sharpe, M. (2005). Functional symptoms and signs in neurology: assessment and diagnosis. *Journal of Neurology, Neurosurgery & Psychiatry, 76*(Suppl I), i2–i12. https://jnnp.bmj.com/content/76/suppl_1/i2Support & Awareness OrganizationsFND Hope International – https://fndhope.orgThe Functional Neurological Disorder Society (FNDS) – https://www.fndsociety.orgMayo Clinic: Functional Neurological Disorder – https://www.mayoclinic.org/diseases-conditions/conversion-disorder/symptoms-causes/syc-20355197Podscasts and storiesNeurology Podcast by the American Academy of Neurology (AAN) – https://www.aan.com/podcastFND Portal Podcast (FND Hope International) – https://fndhope.org/fnd-portal-podcast

In this enlightening episode, I sit down with Gary Binkow, an award-winning film and TV producer turned wellness entrepreneur. As the co-founder of Studio71 and a driving force behind health brands like The Swell Score, AHHA!, ProLon, and FastBar, Gary shares his unique journey from the entertainment industry to health advocacy. We delve into the hidden dangers of counterfeit supplements, the deceptive practice of "Fairy Dusting," and how consumers can make informed choices. Gary also sheds light on Environmentally Acquired Illnesses, offering practical tips to detoxify your home and improve well-being. Additionally, we explore the link between environmental factors and neurological disorders, including "Type 3 Alzheimer's". Tune in to discover how to navigate the overwhelming health information landscape and become an empowered consumer. Want to become a Certified Healthy Home Inspector?! This groundbreaking course, led by a world-renowned doctor and building biologist with over 25 years of experience, is designed to empower passionate individuals—especially moms—to become Certified Healthy Home Inspectors. Learn to identify and mitigate household health hazards, and help create safer living spaces in your community. Resources: Become a member of The Swell Score to find and save on safe, 3rd-party tested supplements, ultra-clean, low-tox bath and beauty, and much more. Get 20% off with code: CLAUDIA20 Follow The Swell Score on Instagram Become a Certified Healthy Home Inspector  Follow the host, Claudia, on Instagram and check out her website Shop Puori grass-fed protein powder + supplements (Clean Label Certified and third-party tested!!!) discount code: HEALINGTHESOURCE

Send us a textSleep. According to the National Institute of Neurological Disorders, quality sleep is as essential to survival as food and water. It is crucial for forming and maintaining the neural pathways in your brain that allow you to learn and create new memories. Lack of sleep can make it harder to concentrate and respond quickly.Now, imagine being a healthcare professional—a nurse, physician, or surgical technician—who is also the parent of a child who struggles to sleep and prevents anyone else in the house from getting rest. Yet your job requires you to make critical decisions and perform complex tasks while being chronically sleep-deprived, which can have catastrophic consequences.Enter Lacy Hess, a nurse entrepreneur who created Lacy's Lullabies, a sleep consulting business aimed at helping parents and children achieve the restful sleep they need. As a certified pediatric sleep consultant, Lacy assists parents in developing safe sleep plans designed to promote sleep independence. With 13 years of experience as a Registered Nurse, a certification in Emergency Nursing, and a Master's degree in Education, Lacy brings a wealth of knowledge and credibility to her practice. Her clients consistently provide rave reviews.If you're a nurse considering a change in specialty or looking to start a side hustle, sleep consulting could be an ideal option. This field leverages many skills that nurses excel at, including flexibility, time management, prioritization, and the ability to provide evidence-based education.In the five-minute snippet: Well, son of a nutcracker, it's Buddy the Elf. For Lacy's bio, visit my website (link below).Lacy's Lullabies BlogLacys Lullabies FB pageContact The Conversing Nurse podcastInstagram: https://www.instagram.com/theconversingnursepodcast/Website: https://theconversingnursepodcast.comYour review is so important to this Indie podcaster! You can leave one here! https://theconversingnursepodcast.com/leave-me-a-reviewWould you like to be a guest on my podcast? Pitch me! https://theconversingnursepodcast.com/intake-formCheck out my guests' book recommendations! https://bookshop.org/shop/theconversingnursepodcast Email: theconversingnursepodcast@gmail.comThank you and I'll talk with you soon!

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!   Subscribe to the podcast   If you would like to get automatic updates of new podcast episodes, you can subscribe to the podcast on Apple Podcasts or Stitcher. You can subscribe in your favorite podcast app. You can also support our podcast through our tip jar https://tips.pinecast.com/jar/unstoppable-mindset .   Leave us an Apple Podcasts review   Ratings and reviews from our listeners are extremely valuable to us and greatly appreciated. They help our podcast rank higher on Apple Podcasts, which exposes our show to more awesome listeners like you. If you have a minute, please leave an honest review on Apple Podcasts.       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, 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. To subscribe to our podcast and to learn about upcoming episodes, please visit www dot Michael hingson.com slash podcast. Michael Hingson is spelled m i c h a e l h i n g s o n. While you're on the site., please use the form there to recommend people who we ought to interview in upcoming editions of the show. And also, we ask you and urge you to invite your friends to join us in the future. If you know of any one or any organization needing a speaker for an event, please email me at speaker at Michael hingson.com. I appreciate it very much. To learn more about the concept of blinded by fear, please visit www dot Michael hingson.com forward slash blinded by fear and while you're there, feel free to pick up a copy of my free eBook entitled blinded by fear. The unstoppable mindset podcast is provided by access cast an initiative of accessiBe and is sponsored by accessiBe. Please visit www.accessibe.com . AccessiBe is spelled a c c e s s i b e. There you can learn all about how you can make your website inclusive for all persons with disabilities and how you can help make the internet fully inclusive by 2025. Thanks again for Listening. Please come back and visit us again next week.

In the fifth Season of the National Institute of Neurological Disorders and Stroke's Building Up the Nerve podcast, we help you strengthen your science communication skills with tools and advice to use throughout your career. We know that navigating your career can be daunting, but we're here to help—it's our job!In the eighth episode of the season, we talk about Establishing Your Professional Identity, focusing on tips for defining who you are in your career, and developing skills and strategies to create and communicate who you are, or what your “brand” is, in your field and in the public.Featuring Thiago Arzua, PhD, Postdoctoral Fellow at Columbia University's Zuckerman Institute; Carmen Maldonado-Vlaar, PhD, Professor at University of Puerto Rico-Río Piedras Campus; and Erich Jarvis, PhD, Professor at Rockefeller University and Investigator at Howard Hughes Medical Institute.ResourcesPicture a Scientist: https://www.pictureascientist.com/ Black in Neuro: https://blackinneuro.com/ Ciencia Puerto Rico: https://www.cienciapr.org/ NIH Blueprint and BRAIN Initiative® ENDURE R25 Program: https://neuroscienceblueprint.nih.gov/training/endure-undergraduate-education NEURO-ID Program: https://neuroid.uprrp.edu/NeuroBoricuas at UPR Cayey: https://neuroboricuasuprcayey.wordpress.com/ Transcript available at http://ninds.buzzsprout.com/.

In the fifth Season of the National Institute of Neurological Disorders and Stroke's Building Up the Nerve podcast, we help you strengthen your science communication skills with tools and advice to use throughout your career. We know that navigating your career can be daunting, but we're here to help—it's our job!In the seventh episode of the season, we talk about Engaging with Non-Scientists focusing on interactive strategies to promote public awareness of and participation in science, and spoke to the importance of being able to effectively communicate your work to multiple audiences.Featuring Jennifer Buckley, PhD, Professor in Mechanical Engineering at the University of Delaware and Co-Founder & President of The Perry Initiative; Sadhana Jackson, MD, Investigator in the Surgical Neurology Branch in the NIH National Institute of Neurological Disorders and Stroke; and Michael Wells, PhD, Assistant Professor of Human Genetics at the University of California, Los Angeles.ResourcesWatch Dr. Sadhana Jackson on Karen Hunter Show: https://www.youtube.com/watch?v=2AAo6zxKRxo The Perry Initiative: https://perryinitiative.org/ Society for Neuroscience Advocacy Network: https://www.sfn.org/advocacy/advocacy-network MIT Science Policy Initiative: https://mitspi.squarespace.com/ Transcript available at http://ninds.buzzsprout.com/.

Imagine unlocking a healthier, more vibrant life by simply adjusting the way you sit, stand, and breathe. Our guest today, Dr. Krista Burns shares her powerful journey from Olympic dreams cut short by a spinal injury to becoming a leading expert in posture correction. Through small but transformative adjustments to our posture, she shows how we can alleviate pain, sharpen our minds, and reclaim our confidence. Her story is a testament to the resilience of the human spirit and the profound impact of mindful movement in a world increasingly shaped by sedentary habits. It's time to sit tall, breathe deep, and live with intention—because even the smallest changes can ignite big shifts in your health and well-being. Key Takeaways: Learn how to recognize and correct common posture issues, like tech neck, to feel more energized and reduce daily discomfort. Discover practical techniques like neck retractions and posture breaks that can be easily integrated into your routine for long-term benefits. Understand the connection between posture and mental clarity, and how simple adjustments can boost confidence and positivity. Gain insights into creating an ergonomic workspace to support better alignment and overall health. Explore the profound impact of movement and alignment on your nervous system, empowering you to take control of your well-being.   About the Guest:  Dr. Krista Burns is the founder of the American Posture Institute, author of the textbook The Posture Principles, and TEDx Speaker. Dr. Krista is a dual doctorate as a Doctor of Chiropractic and a Doctor of Health Administration, and she is a Functional Neurology Diplomate by the American Chiropractic Neurology Board. Dr. Krista is an instructor of clinical sciences for doctoral students at National University of Health Sciences and is an adjunct professor at Everglades University teaching public health to masters students. She has been featured on media including ABC, CBS, NBC, Fox News Radio, and Global Woman Magazine, and prestigious stages including the World Congress of Neurology and Neurological Disorders and the World Congress of Falls and Postural Stability. She was recognized as a Top 100 Doctor by the Global Summits Institute and is the host of the International Posture Symposium. https://americanpostureinstitute.com/ https://drkrista.kartra.com/page/the-7-day-posture-reset-register   Connect with Dr. Michelle and Bayleigh at: https://smallchangesbigshifts.com hello@smallchangesbigshifts.com https://www.linkedin.com/company/smallchangesbigshifts https://www.facebook.com/SmallChangesBigShifts https://www.instagram.com/smallchangesbigshiftsco   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! Subscribe to the podcast If you would like to get automatic updates of new podcast episodes, you can subscribe to the podcast on Apple Podcasts or Stitcher. You can also subscribe in your favorite podcast app. Leave us an Apple Podcasts review Ratings and reviews from our listeners are extremely valuable to us and greatly appreciated. They help our podcast rank higher on Apple Podcasts, which exposes our show to more awesome listeners like you. If you have a minute, please leave an honest review on Apple Podcasts.

Is Your Microbiome Sabotaging Your Health? I am joined by Kiran Krishnan as we delve into the fascinating world of gut health and probiotics! Kiran explains the crucial roles of different types of bacteria in maintaining gut health, the pitfalls of common probiotic supplements, and introduces us to spore-based probiotics and psychobiotics. He offers actionable insights into improving gut health through diet, exercise, and the right supplements.  Kiran Krishnan is renowned research microbiologist and an expert in the human microbiome. With over two decades of experience in the field and has been at the forefront of groundbreaking research, focusing on the critical role our gut microbiome plays in overall health. Visit https://justthrivehealth.com and use code NAT20 for a discount. What We Discuss Understanding Gut Health and the Human Microbiome 00:27 The Role of Microbes in Digestive Health 01:11 Microbiome Diversity and Its Impact on Health 03:34 Challenges with Gut Testing Kits 04:23 Functional Redundancy in the Microbiome 05:29 Balancing Microbial Populations for Optimal Health 08:40 The Importance of Microbiome Diversity 10:10 Misconceptions About Pathogens in the Gut 11:23  The Impact of Modern Lifestyle on Gut Health 19:26 The Gut-Brain Connection 27:04 Inflammation and the HPA Axis 32:06 Neurodegeneration and Protein Misfolding 32:55 Impact of Endotoxins on Neurotransmitters 34:27 Gut-Brain-Liver Axis and Energy Balance 35:33 The Role of Sleep and BDNF in Brain Repair 40:44 Rising Prevalence of Neurological Disorders 41:51 Probiotics and Gut Health Solutions 43:57 The Importance of Fiber 54:04 Conclusion and Product Recommendations 01:00:48   Thank you to our sponsors for making this episode possible: Zona Health: Visit https://www.zona.com/ and use code NAT24 to save $100 on the purchase of a Zona Plus device Element Health Supply: Use code Lonevity when shopping at https://elementhealthsupply.com/discount/Longevity to save on your orders.    SiPhox: Visit http://SiPhoxhealth.com/nat and save on your test.    Find more from Kiran Krishnan & Just Thrive: Website: https://justthrivehealth.com  Instagram: https://www.instagram.com/justthrivehealth/    Find more from Nathalie: YouTube: https://www.youtube.com/channel/UCmholC48MqRC50UffIZOMOQ  Join Nat's Membership Community: https://www.natniddam.com/bsp-community  Sign up for Nats Newsletter: https://landing.mailerlite.com/webforms/landing/i7d5m0  Instagram: https://www.instagram.com/nathalieniddam/  Website: www.NatNiddam.com    Facebook Group: https://www.facebook.com/groups/biohackingsuperhumanperformance    Key Take Aways: Gut health significantly impacts overall well-being, including mental health, cognitive function, and systemic health. Maintaining a balance of gut bacteria, which in turn supports metabolic, immune, and neurological health. Consuming a diverse diet rich in fibers helps promote this diversity. Consistent dietary and lifestyle changes are important for maintaining a healthy gut. Prebiotics are as important as probiotics feed beneficial bacteria and support a healthy microbiome.

Harnessing Yoga's Potential in Neuro Rehabilitation and the Gut-Brain Connection: Nutritionist Leyla Muedin discusses a pilot study from Germany highlighting the benefits of integrating yoga into inpatient neuro rehabilitation for conditions like multiple sclerosis and stroke. The study shows significant improvements in pain, spasticity, anxiety, and overall quality of life. Additionally, Leyla explores the expanding research on the gut-brain axis, revealing how a healthy gut microbiome influences mental resilience and stress response. She emphasizes the importance of addressing both physiological and psychological factors to manage anxiety and improve mental health.

Working with clients with Functional neurologic disorders (FND) can be confusing and challenging. If you're stuck and aren't sure how to help your clients you've gotta check out this episode! Occupational therapists and industry leaders in the treatment of FND Julie MacLean and Jessica Ranford discuss their expertise in using a sensory-based approach to treatment. In their work they noticed certain patterns emerging for people experiencing FND. By conducting detailed sensory profiles and histories, the OTs were able to identify patterns in how these patients processed sensory information. Many exhibited heightened sensory sensitivity, sensory avoidance, and low sensory registration - leading to cognitive, emotional, and motor control issues. The OTs developed a multi-step treatment approach focused on: 1) Increasing patient self-awareness of their sensory processing and arousal levels 2) Exploring individualized sensory strategies to self-regulate 3) Creating personalized "sensory diets" of activities to maintain balance This sensory-based framework, combined with motor retraining when needed, has been effective in helping FND patients improve their symptoms and expand their participation in daily life. Overall, this discussion highlighted the valuable role occupational therapy can play in assessing and treating the complex sensory processing difficulties experienced by many individuals with functional neurological disorders. FND specific resources:  www.neurosymptoms.org  www.FNDhope.org Overcoming Functional Neurological Disorders Workbook, Reset and Rewire: The FND Workbook  OT and sensory processing specific resources:  Living Sensationally: Understanding Your Senses by Winnie Dunn  The Spiral Foundation Sensory Modulation & Environment: Essential Elements of Occupation by Tina Champagne The Sensory Connection Program and Workbooks by Karen Moore  Recent OT publications:  Sensory Processing Difficulties and Occupational Therapy Outcomes for Functional Neurological Disorder: A Retrospective Cohort Study. McCombs KE, MacLean J, Finkelstein SA, Goedeken S, Perez DL, Ranford J. Neurol Clin Pract. 2024 Jun;14(3):e200286.   Outpatient Approach to Occupational Therapy for Paroxysmal Functional Neurologic Symptoms: Sensory Modulation Training as an Emerging Treatment. Ranford J, MacLean J.  Neurol Clin. 2023 Nov;41(4):695-709. doi: 10.1016/j.ncl.2023.02.008. Epub 2023 Apr 20 Sensory Processing Difficulties in Functional Neurological Disorder: A Possible Predisposing Vulnerability? Ranford J, MacLean J, Alluri PR, Comeau O, Godena E, LaFrance WC Jr, Hunt A, Stephen CD, Perez DL.Psychosomatics. 2020 Jul-Aug;61(4):343-352. Occupational therapy consensus recommendations for functional neurological disorder. Nicholson C, Edwards MJ, Carson AJ, Gardiner P, Golder D, Hayward K, Humblestone S, Jinadu H, Lumsden C, MacLean J, Main L, Macgregor L, Nielsen G, Oakley L, Price J, Ranford J, Ranu J, Sum E, Stone J. J Neurol Neurosurg Psychiatry. 2020 Oct;91(10):1037-1045.

In the fifth Season of the National Institute of Neurological Disorders and Stroke's Building Up the Nerve podcast, we help you strengthen your science communication skills with tools and advice to use throughout your career. We know that navigating your career can be daunting, but we're here to help—it's our job!In the sixth episode of the season, we talk about Writing Impactful Publications, focusing on how to structure and write a paper, choose a journal, and craft engaging and accessible figures.Featuring Bang Wong, MA, MS, Senior Director at Vertex Pharmaceuticals; Marina Picciotto, PhD, Professor at Yale University; and Tanya Garcia, PhD, Associate Professor at University of North Carolina, Chapel Hill.ResourcesReferenced paper by Dr. Amy Arnsten: Wang, Min, et al. "α2A-adrenoceptors strengthen working memory networks by inhibiting cAMP-HCN channel signaling in prefrontal cortex." Cell 129.2 (2007): 397-410. https://www.cell.com/fulltext/S0092-8674(07)00344-3?large_figure=true Referenced Papers by Bang Wong:Wong, B. Design of data figures. Nat Methods 7, 665 (2010). https://doi.org/10.1038/nmeth0910-665 Wong, B. Color coding. Nat Methods 7, 573 (2010). https://doi.org/10.1038/nmeth0810-573Wong, B. Points of view: Color blindness. Nat Methods 8, 441 (2011). https://doi.org/10.1038/nmeth.1618Check out more of Bang's papers: https://www.nature.com/search?author=Bang%20WongColor Contract website:Example: https://webaim.org/resources/contrastchecker/Writing Science: How to Write Papers That Get Cited and Proposals That Get Funded. By Joshua Schimel: https://global.oup.com/academic/product/writing-science-9780199760244 Experimental Design Editorials in the Journal of Neuroscience https://www.jneurosci.org/collection/experimental-design-editorialsTranscript available at http://ninds.buzzsprout.com/.

Functional Neurological Disorder or FND explained, including common  symptoms, risk factors and diagnostic criteria. Also includes FND treatment as well as distinguishing features from other conditions. Consider subscribing on YouTube (if you found any of the info useful!): https://www.youtube.com/channel/UCRks8wB6vgz0E7buP0L_5RQ?sub_confirmation=1Patreon: https://www.patreon.com/rhesusmedicineBuy Us A Coffee!: https://www.buymeacoffee.com/rhesusmedicineTimestamps:0:00 What is Functional Neurological Disorder? 0:40 Functional Neurological Disorder Symptoms1:52 Functional Neurological Disorder Causes and Risk Factors 3:00 Functional Neurological Disorder Diagnosis 4:43 Functional Neurological Disorder DSM V Criteria5:20 Functional Neurological Disorder Treatment Links to FND Resources:https://fndhope.org/https://neurosymptoms.org/en/ReferencesBMJ Best Practice (2024) - “Functional neurological and somatic symptom disorders”. Available at https://bestpractice.bmj.com/topics/en-gb/989Prof. J. Stone - Neurosymptoms (2021) - Available at https://neurosymptoms.org/en/S. C. Lidstone, R. Araújo, J. Stone, B. R. Bloem (2020) - “Ten myths about functional neurological disorder”. Available at https://onlinelibrary.wiley.com/doi/epdf/10.1111/ene.14310Selma Aybek, David L Perez, **(2022) - “Diagnosis and management of functional neurological disorder”. Available at https://www.bmj.com/content/376/bmj.o64National Institution of Neurological Disorders and Stroke (2024) - “Functional Neurologic Disorder”. Available at https://www.ninds.nih.gov/health-information/disorders/functional-neurologic-disorderPlease remember this podcast and all content from Rhesus Medicine is meant for educational purposes only and should not be used as a guide to diagnose or to treat. Please consult a healthcare professional for medical advice. 

In this episode of the Brain & Life podcast, Dr. Daniel Correa is joined by Top Chef contestant and restaurant owner Dan Jacobs. Dan shares his Kennedy disease diagnosis and how despite his symptoms, he found his way to the Top Chef kitchen. He also discusses what led him to pursue a career in cooking and how he is planning for his future. Dr. Correa is then joined by Dr. Chris Grunseich, a neurologist and researcher with a focus on neurodegenerative disorders, working at the NIH in the National Institute of Neurological Disorders and Stroke. Dr. Grunseich explains Kennedy disease and other genetic disorders and how researchers are working to find exactly what patients need to thrive.   Dan Jacobs, Dr. Correa, and Dr. Peters also shared some of their favorite holiday recipes in this episode! See the end of the show notes to learn more.      We invite you to participate in our listener survey! By participating in the brief survey, you will have the opportunity to enter your name and email address for a chance to win one of five $100 Amazon gift cards.   Additional Resources National Organization for Rare Diseases 8 Questions to Ask Before Undergoing Genetic Testing Genetic Testing and Disease Resources   Other Brain & Life Episodes on Similar Topics Aaron Lazar on His ALS Journey and the Impossible Dream Author Tanita Allen on Existing with Huntington's Disease Master Chef Christine Ha on Adapting to Life with NMO We want to hear from you! Have a question or want to hear a topic featured on the Brain & Life Podcast? ·       Record a voicemail at 612-928-6206 ·       Email us at BLpodcast@brainandlife.org   Social Media:   Guests: Dan Jacobs @chefdanjacobs; Dr. Chris Grunseich @nihgov Hosts: Dr. Daniel Correa @neurodrcorrea; Dr. Katy Peters @KatyPetersMDPhD     Recipes Dr. Peters' Favorite Turkey Risotto Dr. Correa's Favorite Mojo Verde Dan Jacobs' Smashed Cucumber Salad Ingredients • 6-8 persian cucmbers or 2 large seedless cucumbers • 1/4C mung bean sprouts • 1/4C sliced daikon radish • 1/4C scallions sliced as thin and long as you can • 1 bunch cilantro roughly picked (you can leave some stem on. The stems are full of flavor. • 1/4C dill • 1/4C roasted and salted peanuts chopped up in a food processor • 2T chili crunch (by whatever producer. Fly by Jing's is a nice one.) • 4T black vinegar • 1t salt • 2t sugar • 1/4C sesame oil   Process 1. Put cucumbers in a gallon ziplock bag. Do not seal them. If using Persian cucumbers, you will need to chop them in. Thirds and then halve lengthwise. 2. Using a rolling pin or mallet, beat the cucumbers up a bit. The irregular crags and breaks will hold the vinaigrette perfectly. 3. Mix the chili crunch, black vinegar, sesame oil, salt, and sugar. 4. Mix all ingredients.

In the fifth Season of the National Institute of Neurological Disorders and Stroke's Building Up the Nerve podcast, we help you strengthen your science communication skills with tools and advice to use throughout your career. We know that navigating your career can be daunting, but we're here to help—it's our job!In the fifth episode of the season, we talk about Securing Funding for Research focusing on choosing what funding to apply for, “pitching” your science to different funders, and writing effective grant applications.Featuring Sonya Dumanis, PhD, Executive Vice President of the Coalition for Aligning Science and Deputy Director for Aligning Science Across Parkinson's; Kat M. Steele, PhD, Associate Director of CREATE and Albert Kobayashi Professor in Mechanical Engineering at University of Washington; and Gene Yeo, PhD, MBA, Professor of Cellular and Molecular Medicine at University of California, San Diego and Chief Scientific Advisor, Sanford Laboratories for Innovative Medicine.ResourcesNIH Funding OpportunitiesSmall Business Innovation Research (SBIR) and Small Business Technology Transfer (STTR) grants: https://seed.nih.gov/small-business-funding/small-business-program-basics/understanding-sbir-sttr NINDS Funding Opportunities: https://www.ninds.nih.gov/funding/find-funding-opportunities NINDS Training & Career Development Opportunities: https://www.ninds.nih.gov/funding/training-career-development NIH ResourcesEarly Career Reviewer program: https://public.csr.nih.gov/ForReviewers/BecomeAReviewer/ECR NIH RePORTER: https://reporter.nih.gov/ Early Stage Investigator (ESI) Policies: https://grants.nih.gov/policy-and-compliance/policy-topics/early-stage-investigators NINDS Guidelines for incorporating rigor into grant applications: https://www.ninds.nih.gov/funding/preparing-your-application/preparing-research-plan/rigorous-study-design-and-transparent-reporting NIH Activity Codes: https://grants.nih.gov/funding/activity-codes Allen Institute's Allen Distinguished Investigators: https://alleninstitute.org/division/frontiers-group/distinguished-investigators/ Advanced Research Projects Agency for Health (ARPA-H): https://arpa-h.gov/ Aligning Science Across Parkinson's (ASAP) Disease – Collaborative Research Network (CRN): https://parkinsonsroadmap.org/research-network/# California Institute for Regenerative Medicine (CIRM) grants: https://www.cirm.ca.gov/ Transcript available at http://ninds.buzzsprout.com/.

The fifth Season of the National Institute of Neurological Disorders and Stroke's Building Up the Nerve podcast, where we help you strengthen your science communication skills with tools and advice to use throughout your career. We know that navigating your career can be daunting, but we're here to help—it's our job!In the fourth episode of the season, we talk about Crafting Effective Presentations, focusing on how presentations are used in traditional science communication and how to effectively present in different forms and venues, with accessibility built in by design.Featuring Alfredo Quiñones-Hinojosa, MD, Professor, Endowed Chair, and Dean of Research at Mayo Clinic Florida; Alicia Wooten, PhD, Co-Founder of Atomic Hands, and Associate Professor at Gallaudet University; Huda Zoghbi, MD, Professor at Baylor College of Medicine, Investigator at Howard Hughes Medical Institute, and Director at Texas Children's Hospital.Please note that Dr. Alicia Wooten conducts the interview via ASL with a voice interpreter. To watch this podcast episode with ASL interpretation, please visit: https://www.youtube.com/watch?v=6gNut7ou55g. ResourcesAtomic Hands: https://atomichands.com/Transcript available at http://ninds.buzzsprout.com/.

Lauren and JJ welcome veterinary neurologist Dr. Jill Narak to the podcast to discuss brain-eating and brain-hijacking (zombie!) diseases. Resources: * IMDB entry for The Return of the Living Dead (1985), directed by Dan O'Bannon: https://www.imdb.com/title/tt0089907/ * Behavior-altering parasites, Wikipedia, accessed 10/26/24: https://en.m.wikipedia.org/wiki/Behavior-alteringparasite * Naegleria fowleri infection, Centers for Disease Control, accessed 10/26/24: https://www.cdc.gov/naegleria/about/index.html * Transmissible spongiform encephalopathies, National Institute of Neurological Disorders and Stroke, accessed 10/26/24: https://www.cdc.gov/naegleria/about/index.html * Echinococcosis, Centers for Disease Control, accessed 10/26/24: https://www.cdc.gov/naegleria/about/index.html * Siyadatpanah, A., et al. Cerebral cystic echinococcosis (2020). Case reports in infectious diseases. https://pmc.ncbi.nlm.nih.gov/articles/PMC7066420/ * Heyward, G. The zombie fungus from 'The Last of Us' is real - but not nearly as deadly (2023), NPR, last accessed 10/26/24: https://www.npr.org/2023/01/30/1151868673/the-last-of-us-cordyceps-zombie-fungus-real# * Flegr, J. Effects of _Toxoplasma on human behavior (2007). Schizophrenia bulletin, 33(3): 757-760. https://pmc.ncbi.nlm.nih.gov/articles/PMC2526142/ * Adebiyi, O. E., et al. Neurocognitive domains and neuropathological changes in experimental infection with Trypanosoma brucei brucei in Wister rats (2021). Heliyon, 7(11). https://pmc.ncbi.nlm.nih.gov/articles/PMC8571699/ * Alvarado-Esquivel. Toxocara infection in psychiatric inpatients: A case control seroprevalence study (2013). PLoS One, 8(4). https://pmc.ncbi.nlm.nih.gov/articles/PMC3633879/ * Horsehair worm. The Wildlife Trusts, accessed 10/26/24. https://www.wildlifetrusts.org/wildlife-explorer/marine/worms/horsehair-worm# * Gasque, S. N., et al. Where the baculoviruses lead, the caterpillars follow: baculovirus-induced alterations in caterpillar behavior (2019). Current opinion in insect science, 33: 30-36. https://www.sciencedirect.com/science/article/abs/pii/S2214574518300841# * Clinical Overview of Rabies, Centers for Disease Control, accessed 10/26/24: https://www.cdc.gov/rabies/hcp/clinical-overview/index.html * Zombie, Wikipedia, accessed 10/26/24: https://en.wikipedia.org/wiki/Zombie Special Guest: Jill Narak.

The fifth Season of the National Institute of Neurological Disorders and Stroke's Building Up the Nerve podcast, where we help you strengthen your science communication skills with tools and advice to use throughout your career. We know that navigating your career can be daunting, but we're here to help—it's our job!In the third episode of the season, we talk about Collaborating with Partners in Research, focusing on how to best learn from and include the perspectives of non-scientists and persons with lived experience in research and science.Featuring Alice S. Chen-Plotkin, MD, Professor at the University of Pennsylvania, Director of the MIND Initiative, and Neurologist at Hospital of the University of Pennsylvania; Sonia Vallabh, PhD, Senior Group Leader at Broad Institute of MIT and Harvard, and Assistant Professor of Neurology at Massachusetts General Hospital, and Olajide Williams, MD, Vice Dean of Community Health & Professor at Columbia University Vagelos College of Physicians & Surgeons. ResourcesHip Hop Public Health: https://www.hhph.org/ The Tipping Point by Malcom GladwellInternational Youth Neuroscience Association: https://www.youthneuro.org/Hybrid Workshop: Advances in Therapeutics Development for Parkinson's Disease co-chaired by Dr. Alice Chen-PlotkinCureFFI.org by Dr. Eric Vallabh MinikelHDBuzz: Huntington's disease research newsABRCMS: Annual Biomedical Research Conference for Minoritized Scientists: https://abrcms.org/  Transcript available at http://ninds.buzzsprout.com/.

DISCLAMER >>>>>>    The Ditch Lab Coat podcast serves solely for general informational purposes and does not serve as a substitute for professional medical services such as medicine or nursing. It does not establish a doctor/patient relationship, and the use of information from the podcast or linked materials is at the user's own risk. The content does not aim to replace professional medical advice, diagnosis, or treatment, and users should promptly seek guidance from healthcare professionals for any medical conditions.   >>>>>> The expressed opinions belong solely to the hosts and guests, and they do not necessarily reflect the views or opinions of the Hospitals, Clinics, Universities, or any other organization associated with the host or guests.       Disclosures: Ditch The Lab Coat podcast is produced by (Podkind.co) and is independent of Dr. Bonta's teaching and research roles at McMaster University, Temerty Faculty of Medicine and Queens University. Welcome to "Ditch the Lab Coat," the podcast where we break down health issues with a critical and skeptical eye. I'm your host, Dr. Mark Bonta.This episode is a special interlude where we'll address your burning questions about staying healthy during the fall and winter seasons.We'll delve into the effects of COVID-19 on children's health and social interactions, emphasizing the importance of accepting viral illnesses as a normal part of life. We'll also revisit some previous topics, including addiction medicine, critical care, and infectious diseases, reflecting on how these issues intersect with our everyday experiences.We'll discuss the challenges of navigating quick-fix health cures often advertised and why it's crucial to be skeptical and informed. I'll share personal insights on practical preventive measures, the impact of parental health on children, and the science behind vaccinations. Plus, we'll explore the significance of moderate exercise, good sleep hygiene, and proper hydration in maintaining overall health.Thanks for joining us today. Let's dive in—and don't forget to check out our newly revamped website at www.ditchthelabcoat.com for more resources and links. Stay tuned for our next episode, where we tackle the complex world of diabetes.00:00 – Answering health questions in special podcast session.03:41 – Understanding healthcare through accessible, unscripted conversations.08:49 – No quick fix for avoiding common illnesses.12:26 – Vitamin C is generally sufficient; supplements unnecessary.15:02 – Exercise improves mental, bone, and cardiovascular health.19:07 – Moderation in exercise prevents frequent illness.24:28 – Vaccines crucial for vulnerable, aging populations' protection.27:03 – Ibuprofen, Tylenol help symptoms; practice good hygiene.29:53 – Cranberry extract unlikely effective against urinary infections.35:14 – Adverse childhood events increase chronic illness risks.39:10 – Research, decide wisely; prioritize reputable sources.40:32 – Rebranding website; thanks to the team and supportive family.This version provides clear and structured timestamps for easier reference during the podcast.

Howie and Harlan discuss health and healthcare issues in the headlines, including a powerful—but dangerous—new gene therapy, racial disparities in excess deaths during the COVID pandemic, and the limited insurance coverage for highly effective new obesity drugs.  Links: The Physician Shortage “Opening the Door Wider to International Medical Graduates—The Significance of a New Tennessee Law” “New Licensure Pathway for Some Internationally Trained Physicians” “Brain-drain and health care delivery in developing countries” “Talk of an Immigrant ‘Invasion' Grows in Republican Ads and Speech” Subspecialty Expertise from AI “Towards Democratization of Subspeciality Medical Expertise” Gene Therapy “7 children developed blood cancer after Bluebird Bio gene therapy for rare neurological disease” National Institute of Neurological Disorders and Stroke: Adrenoleukodystrophy An AI Warning from a Nobel Laureate Nobel Prize: Nobel Prize in Physics “Why the Godfather of A.I. Fears What He's Built” “Unions Give Workers a Voice Over How AI Affects Their Jobs” Conflicts of Interest and the Role of Peer Reviewers “Medical journal peer reviewers are paid millions by industry, study finds” “Does industry funding equal conflict of interest? Often it does, Yale authors claim” COVID, Race, and Excess Deaths “Racial and Ethnic Disparities in Age-Specific All-Cause Mortality During the COVID-19 Pandemic” Insurance Coverage for GLP-1 Drugs KFF: 2024 Employer Health Benefits Survey “The Miracle Weight-Loss Drug Is Also a Major Budgetary Threat” CDC: Adult Obesity Facts Mothers in Medicine “So Visibly a Mother” Learn more about the MBA for Executives program at Yale SOM. Email Howie and Harlan comments or questions.

DISCLAMER >>>>>>    The Ditch Lab Coat podcast serves solely for general informational purposes and does not serve as a substitute for professional medical services such as medicine or nursing. It does not establish a doctor/patient relationship, and the use of information from the podcast or linked materials is at the user's own risk. The content does not aim to replace professional medical advice, diagnosis, or treatment, and users should promptly seek guidance from healthcare professionals for any medical conditions.   >>>>>> The expressed opinions belong solely to the hosts and guests, and they do not necessarily reflect the views or opinions of the Hospitals, Clinics, Universities, or any other organization associated with the host or guests.       Disclosures: Ditch The Lab Coat podcast is produced by (Podkind.co) and is independent of Dr. Bonta's teaching and research roles at McMaster University, Temerty Faculty of Medicine and Queens University. Welcome to another enlightening episode of "Ditch the Lab Coat," where we delve into the complexities of healthcare with a sharp, science-based skepticism. I'm your host, Dr. Mark Bonta, and today we're joined by the brilliant movement disorders neurologist, Sarah Lidstone.In this episode, we explore the intricacies of Functional Neurological Disorders (FND), a condition where the brain's function fails despite appearing normal on tests. We'll unpack the pivotal role of interdisciplinary care in treating FND, the significance of recognizing symptoms and triggers, and the essentiality of patient acknowledgment for effective therapy.Sarah shares her expertise on the communication breakdowns in brain networks that lead to functional symptoms, and how historical misconceptions have shaped the treatment of such disorders. We critique the healthcare system's often dismissive attitude and discuss strategies to improve provider skills and patient outcomes.Listen as we discuss real-world examples, like dissociative seizures versus epileptic seizures, and the nuanced clinical examinations that differentiate them. We'll also dive into therapy misconceptions and the importance of supporting patient agency in the recovery process.Whether you're a healthcare professional or simply intrigued by the mind-body connection, this episode promises to be an engaging and insightful journey into the world of FND. So, grab your headphones, and let's ditch the lab coat for an hour and uncover the fascinating science behind these complex disorders. Tune in now!07:33 – FND highlights healthcare system's shortcomings and improvements.12:38 – Testing rules out comorbid neurological conditions, non-lesional deficits.20:07 – Societal attitudes challenge understanding of functional disorders.22:08 – FND misdiagnosis: historical misunderstanding, lacking clinical home.30:04 – Emotional challenges diagnosing psychogenic, non-epileptiform seizures.36:45 – Distinguishing seizures can be challenging and nuanced.38:26 – CBT helps control seizures, reducing emergency visits.47:34 – Support patients' agency and structure healthcare systems.51:57 – Recognizing symptom changes enables better treatment understanding.56:11 – Functional neurological disorders often face systemic dismissal.59:37 – Body worked fine despite previous dysfunction experience.

The fifth Season of the National Institute of Neurological Disorders and Stroke's Building Up the Nerve podcast, where we help you strengthen your science communication skills with tools and advice to use throughout your career. We know that navigating your career can be daunting, but we're here to help—it's our job!In the second episode of the season, we talk about Thriving in Team Science, focusing on how to build professional collaborations and guidelines to ensure success for all parties when working in team, especially across disciplines.Featuring Bosiljka Tasic, PhD, Director, Molecular Genetics, Allen Institute for Brain Science; Heidi Baumgartner, PhD, Research Scholar, Stanford University and Executive Director, ManyBabies; and Lingfei Wu, PhD, Assistant Professor, University of PittsburghResourcesArticles from Dr. Lingfei Wu:“Remote collaboration fuses fewer breakthrough ideas” (2023): https://pubmed.ncbi.nlm.nih.gov/38030778/ “Large teams develop and small teams disrupt science and technology” (2019): https://pubmed.ncbi.nlm.nih.gov/30760923/ Resources from ManyBabies: https://manybabies.org/resources/ ManyBabies Collaboration AgreementContributor Role Taxonomy (CRedIT): https://credit.niso.org/ Tenzing.club Protocols.ioTranscript available at http://ninds.buzzsprout.com/.

Feel confused about how to assess and treat someone with Functional Neurological Disorder (FND)? We got your back! In this episode host Erin Gallardo interviews FND experts Heather Salon, PT, DPT, NCS and Julie Maggio, PT, DPT, NCS on this range of neurological symptoms that includes functional movement disorders, seizures, and speech/communication issues. FND is characterized by abnormal brain connectivity and network dysfunction, often presenting with mixed symptoms. A key shift in recent years has been the recognition of FND as a "rule-in" diagnosis, rather than a diagnosis of exclusion. Learn what to expect during the subjective evaluation and how to approach it with best practice. Heather and Julie highlight the importance of identifying specific "rule-in" signs, such as Hoover sign, give-way weakness, and symptom variability, to confidently diagnose FND. They also emphasize the need for a comprehensive assessment, including evaluations of the motor, sensory, and autonomic systems. Also discussed are differential diagnoses like dystonia.   The conversation underscored the multidisciplinary nature of FND care, with physical therapists, occupational therapists, psychologists, and neurologists working collaboratively to provide optimal treatment. Sensory-based interventions, such as the use of Kinesio tape, abdominal binders, and visual feedback, were discussed as valuable tools in the PT's toolbox. Importantly, Heather and Julie stress the need to manage patient expectations and set realistic goals, focusing on improving function and reducing symptoms rather than aiming for complete symptom resolution. They also highlighted the importance of ongoing education and resources for clinicians interested in advancing their knowledge and skills in the FND field. Check out these resources mentioned in the episode: https://www.fndsociety.org/fnd-education FND society education resources 26.08.2023-Information-guideance-sheet-for-medical-professionals.pdf (fndaction.org.uk) Inform the doctor fact sheet Diagnosis and Management of FND A framework for understanding the pathophysiology of functional neurological disorders A practical review of FN for the general physician 

We'd love to hear from you! Send us a text message.In this episode of Discover Daily, hosts Alex and Sienna explore the frontiers of science and technology, from the lingering dangers of World War II bombs to the groundbreaking mapping of a fruit fly's brain. The episode kicks off with a startling incident at Miyazaki Airport in Japan, where a 500-pound U.S. bomb from World War II unexpectedly detonated, creating a large crater and disrupting flights. This event highlights the ongoing challenges Japan faces in dealing with unexploded ordnance, even decades after the war's end.Next, the hosts dive into a monumental achievement in neuroscience - the creation of the first complete map of an adult fruit fly brain. This comprehensive "connectome" reveals the intricate connections between nearly 140,000 neurons and offers unprecedented insights into complex brain function. While fruit flies may seem an unlikely subject, their genetic similarities to humans make them invaluable models for studying neurological disorders and developing targeted therapies.The episode concludes with a mind-boggling discovery in quantum physics that challenges our understanding of time itself. Scientists have found evidence that under certain conditions, photons can seemingly spend a "negative amount of time" passing through a cloud of ultracold atoms. This counterintuitive phenomenon, which appears to show light exiting a material before fully entering it, sheds new light on the bizarre world of quantum mechanics and the fundamental nature of time. Join Alex and Sienna as they unravel these fascinating stories and explore their profound implications for our understanding of the universe.From Perplexity's Discover Feed: https://www.perplexity.ai/page/evidence-of-negative-time-Ut987S07Rl2p3ryWJL_PigPerplexity is the fastest and most powerful way to search the web. Perplexity crawls the web and curates the most relevant and up-to-date sources (from academic papers to Reddit threads) to create the perfect response to any question or topic you're interested in. Take the world's knowledge with you anywhere. Available on iOS and Android Join our growing Discord community for the latest updates and exclusive content. Follow us on: Instagram Threads X (Twitter) YouTube Linkedin

The fifth Season of the National Institute of Neurological Disorders and Stroke's Building Up the Nerve podcast, where we help you strengthen your science communication skills with tools and advice to use throughout your career. We know that navigating your career can be daunting, but we're here to help—it's our job!In the first episode of the season, we talk about Composing Scientific Narratives which focused on how to compose scientific narratives to communicate our findings and how to tell a scientific story in a way that is compelling, but also transparent and objective.Featuring Sean Carroll, PhD, Balo-Simon Endowed Chair of Biology, University of Maryland; Investigator, Howard Hughes Medical Institute; Mónica Feliú Mójer, PhD, Director, Public Engagement with Science, Ciencia Puerto Rico; Director, Inclusive Science Communication & Engagement | Science Communication Lab; and Gina Poe, PhD, Director, UCLA Brain Research Institute; Lorre Scholars Faculty Chair; Professor, University of California, Los Angeles.ResourcesScience Communication Lab: https://sciencecommunicationlab.org/ Dr. Mónica Feliú Mójer's documentary: https://www.youtube.com/watch?v=WNdX_C2jaac Transcript available at http://ninds.buzzsprout.com/.

September 25, 2024 ~ Former NFL quarterback Brett Favre announced he has been diagnosed with Parkinson's disease, during a Congressional testimony on welfare. Guy, Lloyd, and Jamie talk with Michigan Institute of Neurological Disorders' Dr. Aaron Ellenbogen about early signs of Parkinson's, and how his multiple concussions increased his risk. Photo: Ken Ruinard ~ USA Today Network

Professor of neurology at Washington University in St. Louis, Jason Hassenstab and professor and director for the Center on Aging & Health at Johns Hopkins University, Jennifer Schrack, join The Post's Frances Stead Sellers to discuss how the brain changes as you age and what can be done to keep your mind healthy. Then, professor of psychiatry at Columbia University, Robert Klitzman and The Post's Tara Parker-Pope speak with associate editor Jonathan Capehart about ways to de-stigmatize aging. Finally, director for the National Institute of Neurological Disorders & Stroke, Walter J. Koroshetz and associate professor for the department of neurology at Emory University discuss the racial health disparities in chronic disease management. Conversation recorded on Tuesday, September 17, 2024.

Welcome to Season 5 of the National Institute of Neurological Disorders and Stroke's Building Up the Nerve podcast, where we help you strengthen your science communication skills with tools and advice to use throughout your career. We know that navigating your career can be daunting, but we're here to help—it's our job!Transcript available at https://ninds.buzzsprout.com/

A client has hereditary hemochromatosis, which has affected their hip and toes. It is bad enough that they are considering joint replacement. In the meantime, they would like to receive massage for hip pain. Oh, and there's this tiny little issue about having recent strokes. What is going on? How can iron overload cause joint damage, and is it involved in strokes too? Is bodywork even possible in this situation?   Resources:   IHACW Episode 317, available here   Agarwal, A.R. et al. (2022) ‘Postoperative Complications in Patients With Hereditary Hemochromatosis Undergoing Total Joint Arthroplasty: A Matched Cohort Analysis', The Journal of the American Academy of Orthopaedic Surgeons, 30(1), pp. e99–e107. Available at: https://doi.org/10.5435/JAAOS-D-21-00105.   Arteriovenous Malformations (AVMs) | National Institute of Neurological Disorders and Stroke (no date). Available at: https://www.ninds.nih.gov/health-information/disorders/arteriovenous-malformations-avms (Accessed: 28 August 2024).   Arthropathy and joint pain (2020) Haemochromatosis UK. Available at: https://www.haemochromatosis.org.uk/arthropathy (Accessed: 29 August 2024).   Brain AVM (arteriovenous malformation) - Symptoms and causes (no date) Mayo Clinic. Available at: https://www.mayoclinic.org/diseases-conditions/brain-avm/symptoms-causes/syc-20350260 (Accessed: 30 August 2024).   Carroll, G.J., Breidahl, W.H. and Olynyk, J.K. (2012) ‘Characteristics of the arthropathy described in hereditary hemochromatosis', Arthritis Care & Research, 64(1), pp. 9–14. Available at: https://doi.org/10.1002/acr.20501.   Hemochromatosis | Arthritis Foundation (no date). Available at: https://www.arthritis.org/diseases/hemochromatosis (Accessed: 28 August 2024).   Hemochromatosis (Iron Overload): Causes, Symptoms, Treatment, Diet & More (no date). Available at: https://my.clevelandclinic.org/health/diseases/14971-hemochromatosis-iron-overload (Accessed: 28 August 2024). McCurdie, I. and Perry, J.D. (1999) ‘Haemochromatosis and exercise related joint pains', BMJ : British Medical Journal, 318(7181), pp. 449–451.   Porter, J.L. and Rawla, P. (2024) ‘Hemochromatosis', in StatPearls. Treasure Island (FL): StatPearls Publishing. Available at: http://www.ncbi.nlm.nih.gov/books/NBK430862/ (Accessed: 30 August 2024).   Sahinbegovic, E. et al. (2010) ‘Hereditary hemochromatosis as a risk factor for joint replacement surgery', The American Journal of Medicine, 123(7), pp. 659–662. Available at: https://doi.org/10.1016/j.amjmed.2010.01.024.   Walling, A.D. (1999) ‘The Differential Diagnosis of Joint Pain: Hemochromatosis', American Family Physician, 59(9), pp. 2587–2588.   Host:            Ruth Werner is a former massage therapist, a writer, and an NCBTMB-approved continuing education provider. She wrote A Massage Therapist's Guide to Pathology, now in its seventh edition, which is used in massage schools worldwide. Werner is also a long-time Massage & Bodywork columnist, most notably of the Pathology Perspectives column. Werner is also ABMP's partner on Pocket Pathology, a web-based app and quick reference program that puts key information for nearly 200 common pathologies at your fingertips. Werner's books are available at www.booksofdiscovery.com. And more information about her is available at www.ruthwerner.com.      This podcast sponsored by:     Books of Discovery: www.booksofdiscovery.com   Anatomy Trains: www.anatomytrains.com    Elements Massage: www.elementsmassage.com/abmp   MassageBook: www.massagebook.com

Send us a textHave you ever wondered what's really happening inside the brains of those with ADHD or autism? Unlock the mysteries of ADHD and autism with Dr. Robert Melillo, a pioneer in brain health and neurological disorders. In this episode, Dr. Melillo dives into the science behind ADHD, revealing the brain's imbalances and how environmental factors like diet, technology, and stress can shape neurological development. Discover the role of epigenetics in brain function and learn about Dr. Melillo's innovative methods for restoring balance through targeted therapies. From understanding brain asymmetry to the impact of sleep and physical activity, this episode offers invaluable insights for parents, educators, and anyone interested in brain health. About Dr. Robert Melillo Dr. Robert Melillo is a highly respected specialist in childhood neurological disorders, with over 30 years of experience addressing conditions like autism, ADHD, dyslexia, and more. His expertise extends to diet, nutrition, and neuroimmune disorders. A renowned clinician, university professor, and bestselling author, Dr. Melillo's pioneering research on functional disconnection has significantly advanced our understanding of these disorders. His work led to the creation of the Brain Balance Achievement Centers, and he continues to impact his private practice, helping children and adults improve their neurological health. Connect with Dr. Robert Melillo Website: https://www.drrobertmelillo.com/ Facebook: https://www.facebook.com/DrRobertMelillo/ Instagram: https://www.instagram.com/DrRobertMelillo Linkedin: https://www.linkedin.com/in/robert-melillo-a287b618b/ X (Twitter): https://x.com/DrRobMelillo Youtube: https://www.youtube.com/@drrobertmelillo About me&my health up & Anthony Hartcher me&my health up seeks to enhance and enlighten the well-being of others. Host Anthony Hartcher is the CEO of me&my wellness which provides holistic health solutions using food as medicine, combined with a holistic, balanced, lifestyle approach. Anthony holds three bachelor's degrees in Complementary Medicine; Nutrition and Dietetic Medicine; and Chemical Engineering. Podcast DisclaimerAny information, advice, opinions or statements within it do not constitute medical, health care or other professional advice, and are provided for general information purposes only. All care is taken in the preparation of the information in this Podcast. [Connected Wellness Pty Ltd] operating under the brand of “me&my health up”..click here for moreSupport the show

Pop some melatonin and put on a pot of sleepytime tea, because we're bringing you a nightcap of knowledge and there's no better foundation for learning than a well-rested brain.    This episode, Kristin is a huge hypocrite as she teaches us about the importance of sleep. She's covering the four stages, how sleep (or lack thereof) impacts our brains and bodies, why so many ADHDers in particular have a hard time doin' sleep, and tips and tricks for getting to bed early and waking up on time.    We're also sharing about our Funtown adventures, discussing the privileges of a summer birthday, and continuing our month of controversy with complaints about Oregon drivers.   Whether you're an early morning emu or a late night arctic seabird, there's nothing sexier than a good night's sleep, so come learn how to do it right in this sleepy meat of an episode.  Resources National Sleep Foundation (thensf.org) Managing Sleep in Adults with ADHD: From Science to Pragmatic Approaches - PMC (nih.gov) Brain Basics: Understanding Sleep | National Institute of Neurological Disorders and Stroke (nih.gov) ADHD and Sleep Problems: How Are They Related? (sleepfoundation.org) What Is Sleep Hygiene? Tips To Improve (clevelandclinic.org) ADHD Aha! Podcast ADHD rewired Podcast ADDitude's: ADHD Experts Podcast Alarm Clocks for ADHD: Sleep and Mornings (additudemag.com) King Eider | Audubon Field Guide King Eider call , sound and picture / scientific name Somateria spectabilis / volcano of beauty (youtube.com)   To keep this horse train running (but this isn't a threat): ko-fi.com/weirdsofafeather Visit our website!: weirdsofafeather.com  Find us on Instagram: @weirdsofafeather  Join our Facebook group: Weirds of a Feather

In our latest podcast episode, we delve into the fascinating world of brain waves and neurological diagnostics with Dr. Syed Shabbir, Director of Epilepsy and Medical Director of the EEG Lab at Medstar Franklin Square Medical Center. Hosted by Debra Schindler, this episode sheds light on the complexities of the human brain and the critical role of electroencephalograms (EEGs) in diagnosing and treating neurological disorders. The human brain is an intricate organ, constantly firing neurons and generating electrical activity known as brain waves. These brain waves can be measured using EEGs, a non-invasive method that records macroscopic electroactivity in the brain. Dr. Shabbir explains that EEGs are essential for diagnosing conditions like epilepsy, where abnormal electrical activity can lead to seizures.Dr. Shabbir shares his expertise on how EEGs are conducted, the importance of sleep in detecting abnormalities, and the difference between epileptic and non-epileptic seizures. This episode is a must-listen for anyone interested in neurology and brain health. To schedule an appointment with Dr. Shabbir or another member of MedStar Franklin Square's neurology team, call 443-777-7320.For more episodes of MedStar Health DocTalk, go to medstarhealth.org/doctalk.

Chilly Chat No.2This week we are discussing The Dead Files “Dark Inheritance” (Season 3 Episode 14) which aired January 31, 2014.In this discussion we learned the difference between a physical medium and a mental medium. We commiserate with Amy Allan for the obvious pain she was in while going through the walk. We also learned the difference between a Mental Medium and a Physical Medium.We even had an import debate: Anti-Bean vs Bring on the Beans in chili.So, grab your hard coffee or shower beer, and join us where… The Activity Continues. Content Warning:In this episode we mention Botched abortion causing death, dismemberment, horrible mother/talk of child abuse, talk of suicide, and domestic abuse so trigger warning for those who need it. Also, we swear. The Activity Continues is a paranormal podcast where soul friends, Amy, Megan, and AP chat about pets, true crime, ghost stories, haunts, dreams, and other paranormal stuff including the TV show, The Dead Files. We also sometimes interview interesting people, whether it be a paranormal professional, a Dead Files client, or a listener with spooky stories. This episode was recorded on June 17, 2024 and released on August 1, 2024. Chapter Markers00:00:19 Intro00:01:45 Hello!00:02:48 Content Warning00:03:24 Housekeeping and Chili talk00:09:14 Overview00:10:33 Segment 100:36:46 Segment 200:55:44 Segment 301:13:16 Next week01:15:04 Outro Episode links:*Sources*Susanna Geary: https://www.findagrave.com/memorial/129254030/susanna-agnes-gearyhttps://www.boston.com/news/local-news/2015/11/12/tbt-the-terrifying-murder-mystery-that-changed-the-way-boston-viewed-abortion/Sepsis:https://www.hopkinsmedicine.org/health/conditions-and-diseases/septicemiaPeritonitis:John's Hopkins: https://www.hopkinsmedicine.org/health/conditions-and-diseases/peritonitis# Hydrocephalus:John's Hopkins: https://www.hopkinsmedicine.org/health/conditions-and-diseases/septicemiaNational Institute of Neurological Disorders and Stroke:https://www.ninds.nih.gov/health-information/disorders/hydrocephalus WebMD: https://www.webmd.com/brain/hydrocephalus-facts  *other*Megan's Chili Pick: https://www.allrecipes.com/recipe/233613/best-damn-chili/(note she has not made this, just thought it looked good)The Dead Files Official Podcast: https://pod.link/1642377102for Ai Photos https://www.fotor.com/referrer/1ygaknya  Disclaimer:This podcast is in no way affiliated with Warner Brothers, HBOMax, the Travel Channel, Painless TV, or the TV show The Dead Files or any of its cast or crew. We're just fans that love the show and want to build a community of like-minded people who would enjoy hanging out and discussing the episodes and similar content. Credits:Hosted by: Amy Lotsberg, Megan Simmons, and Amy PiersakProduction, Artwork, and Editing: Amy Lotsberg at Collected Sounds Media, LLC.Theme song. “Ghost Story” and segment music by Cannelle https://melissaoliveri.com Socials and other goodies:Our website, https://www.theactivitycontinues.com/ Facebook Page: https://www.facebook.com/theactivitycontinues Instagram: https://www.instagram.com/theactivitycontinues/ Twitter: https://twitter.com/TheActivityCont   Blog for extras: https://www.theactivitycontinues.com/blog/Patreon: https://www.patreon.com/theactivitycontinuesYouTube: https://bit.ly/TAC_videos Newsletter sign-up: http://eepurl.com/hWnBLL SEND US YOUR PARANORMAL STORIES!Email: theactivitycontinues@gmail.com and maybe it will be read on the show!Or visit our website, https://www.theactivitycontinues.com/ and click on the microphone icon to leave a message and maybe it will be played on the show! BE OUR GUEST!Are you a The Dead Files client, or a paranormal professional, and would be interested in being interviewed on our show? Let us know by filling out our guest form:https://www.theactivitycontinues.com/guests/intake/ Affiliates/SponsorsPlease see our Store page for all the links for all our current affiliates. https://www.theactivitycontinues.com/store/ Thank you for listening, take care of yourselves. We'll see you next week!Become a Patron, join our Ghosty Fam! https://www.patreon.com/theactivitycontinuesRemember to join our Ghosty Fam over on Patron, https://www.patreon.com/theactivitycontinues/Support this podcast at — https://redcircle.com/tac/donations

Dr. Merit Cudkowicz is the Chair of the Department of Neurology and Director of the Sean M. Healey & AMG Center for ALS at Massachusetts General Hospital and the Julieanne Dorn Professor of Neurology at Harvard Medical School in Boston. She is leading the first Platform Trial initiative in ALS and is also the Principal Investigator of the Clinical Coordination Center for the National Institute of Neurological Disorders and Stroke's Neurology Network of Excellence in Clinical Trials (NeuroNEXT).Dr. Cudkowicz is my featured guest as we continue our exploration of Brain Matters.

On this month's episode, we are going to discuss Functional Neurological Disorders or FND.  Patients with this disorder are often stigmatized and, unfortunately, criticized for seemingly faking a disorder.  The reality is that the symptoms of functional neurological disorders are real, can cause significant morbidity, but, thankfully, can most often be remedied by prompt identification, education, and appropriate treatment. Kennedy Krieger president and CEO, Dr. Brad Schlaggar is joined by Dr. Souraya Torbey, a child and adolescent psychiatrist in the Center for Developmental Behavioral Health and the director of the FND Clinic at Kennedy Krieger and Dr. Caitlin Thompson is a staff clinical psychologist in the FND Clinic.  They are also joined by a parent of a child diagnosed with FND. Together the group will delve into FND and its impact not only on the individual but the entire family system.See omnystudio.com/listener for privacy information.

Divyanshu Dubey, M.B.B.S., explains how Mayo Clinic Laboratories' unique PDE10A and TRIM46 assays facilitate care for central nervous system disorders triggered by cancer. Early diagnosis and treatment are important for managing disabling neurological symptoms and malignancy.(00:32) Could you tell us a bit about your background and your role at Mayo Clinic? (01:26) How do the tests that are coming live relate to the larger disease state of neurological disorders? (02:44) Can you share a little bit about the methodology we're using for these particular biomarkers?  (05:15) How was PDE10A discovered? (06:48) Anything you would add? (07:50) Remind us which phenotype-specific assays these biomarkers are being added to, and how physicians should determine whether this testing is appropriate? (09:55) What does early detection of these biomarkers mean for the patient's prognosis, diagnosis, treatment, etc.? (12:33) What are you most excited about with the launch of these tests?

In this episode of the Adjusted Reality Podcast, we dive deep into the world of posture with the renowned Dr. Krista Burns. Posture isn't just about standing tall; it's a critical aspect of our overall health and well-being.  Dr. Burns dives into tech neck, selfie thumb and all of the side effects that our smartphones can conjure up on our neuromusculoskeletal system. Join us as we explore the profound impact that posture can have on your life.Dr. Burns, with her extensive expertise, will provide practical tips and insights to help you transform your posture, reduce pain, and enhance your confidence. Whether you're at your desk, driving, or simply walking, this episode will equip you with the knowledge to stand tall and live a healthier life.Don't miss out on this opportunity to learn from one of the best in the field!Dr. Krista Burns is a dual Doctorate, International Speaker, Author, and Professor.  She is the founder of the American Posture Institute, author of the textbook 'The Posture Principles', TEDx Speaker, and host of the International Posture Symposium.She is a Doctor of Chiropractic with a Doctorate in Health Administration and was recognized as a "Top 100 Doctor" by the Global Summits Institute. She has spoken on prestigious stages including the World Congress of Neurology and Neurological Disorders and the World Congress of Falls and Postural Stability.In the Adjusted Reality podcast, well-known athletes, celebrities, actors, chiropractors, influencers in the wellness industry, and other podcasters will talk with host Dr. Sherry McAllister, president, F4CP, about their experiences with health and wellness. As a special gift for listening today visit f4cp.org/health to get a copy of our mind, body, spirit eBook which focuses on many ways to optimize your health and the ones you love without the use of drugs or surgery. Follow Adjusted Reality on Instagram. Find A Doctor of Chiropractic Near You.Donate to Support the Chiropractic Profession Through Education.

05/26/2024The Healthy Matters PodcastS03_E14 - Brainstorms and Breakthroughs - The Science of Strokes Chances are we've all known someone who has suffered a stroke, and it turns out they're a lot more common than we might think - nearly 800,000 people in the U.S. every year.  Brain health is essential to our wellbeing and suffering a stroke can have profound and even life-altering effects, assuming the patient survives the event.   But how can we identify a stroke?  What should we do when we see one?  What treatments and therapies are available - or better yet, what can we do to protect our brains?May is Stroke Awareness Month, and on Episode 14 we'll have the big brain on brains on our show, Neurologist Dr. Behnam Sabayan (MD, PhD) who will help us get our brains around this essential topic.  We'll go over what happens in the brain, risk factors, treatments, and outcomes for patients, as well as what keeps our brains happy and healthy.  Since time is of the essence whenever someone is having a stroke, we'll also break down the BE FAST acronym to give you the tools to identify and respond to someone having a stroke.  There's a lot to know about the brain when it comes to strokes, and we've got just the guest to walk us through it.  We hope you'll join us!Here are some resources:National Institute of Neurological Disorders and StrokeThe American Stroke AssociationHennepin Healthcare Stroke CenterGot a question for the doc or a comment on the show?Keep an eye out for upcoming shows on social media!Email - healthymatters@hcmed.orgCall - 612-873-TALK (8255)Find out more at www.healthymatters.org

(0:50) - All The Brain Chip Implant Benefits & None of The SurgeryBecome a founding reader of our newsletter: read.thenextbyte.com

A brief overview of the neurologist's role in the diagnosis and treatment of functional neurological disorders, with Drs. Vanessa Veloso and Jeremy Moeller.Note: This podcast is intended solely as an educational tool for learners, especially neurology residents. The contents should not be interpreted as medical advice.Further ReadingHallett M, Aybek S, Dworetzky BA, McWhirter L, Staab JP, Stone J. Functional neurological disorder: new subtypes and shared mechanisms. Lancet Neurol. 2022 Jun;21(6):537-550. doi: 10.1016/S1474-4422(21)00422-1. Stone J, Smyth R, Carson A, Lewis S, Prescott R, Warlow C, Sharpe M. Systematic review of misdiagnosis of conversion symptoms and "hysteria". BMJ. 2005 Oct 29;331(7523):989. doi: 10.1136/bmj.38628.466898.55. Stone J, Carson A, Duncan R, Coleman R, Roberts R, Warlow C, Hibberd C, Murray G, Cull R, Pelosi A, Cavanagh J, Matthews K, Goldbeck R, Smyth R, Walker J, Macmahon AD, Sharpe M. Symptoms 'unexplained by organic disease' in 1144 new neurology out-patients: how often does the diagnosis change at follow-up? Brain. 2009 Oct;132(Pt 10):2878-88. doi: 10.1093/brain/awp220. Kutlubaev MA, Xu Y, Hackett ML, Stone J. Dual diagnosis of epilepsy and psychogenic nonepileptic seizures: Systematic review and meta-analysis of frequency, correlates, and outcomes. Epilepsy Behav. 2018 Dec;89:70-78. doi: 10.1016/j.yebeh.2018.10.010.

Matt is a clinical and research neurologist at Waikato Hospital, Hamilton, New Zealand. His foremost passion is to explore the potential feasibility, safety, and efficacy of metabolic strategies, particularly fasting and ketogenic diets, in creating alternate metabolic states that may benefit people with a variety of neurological disorders. His team conducted the world's first randomized trials involving a ketogenic diet in people with Parkinson's disease and Alzheimer's disease, and is now applying fasting and ketogenic diet protocols in people with Huntington's disease and amyotrophic lateral sclerosis. He is currently conducting a clinical trial in glioblastoma, which combines standard treatments with the most intensive fasting and ketogenic diet protocol ever applied to a group of patients with advanced cancer. Twitter: @drmclphillips Website: metabolicneurologist.com Timestamps: 00:00 Trailer. 00:54 Introduction. 04:32 Clinical assessment includes muscle wasting, twitches, electromyography studies. 08:13 Limited confidence and patient enthusiasm key. Strong rationale. 10:40 Metabolic therapy seeks to improve overall health. 14:42 Fasting improves mitochondria efficiency, aiding weight loss. 17:42 Whole body disorder with inappropriate emotional control. 19:10 Participant noticed benefits of keto diet trial. 22:21 Case report highlights need for further exploration. 25:26 Low fat, high carb diet shows improvement. 28:48 Approach to migraine treatment using diet. 31:34 Continuous monitors and homogenized data in research. 34:51 Mitochondria's role in cancer and metabolic therapy. 36:46 Ketogenic diets reduce cancer cachexia in study. 39:54 Cancer cells consume glucose and amino acids. 44:07 Healthy exercise, rest, and sleep are important. 46:20 Glioblastoma trial and upcoming research in neurodegenerative diseases. 47:48 New Zealand good for small trials, but limited. See open positions at Revero: https://jobs.lever.co/Revero/ Join Carnivore Diet for a free 30 day trial: https://carnivore.diet/join/ Carnivore Shirts: https://merch.carnivore.diet Subscribe to our Newsletter: https://carnivore.diet/subscribe/ . ‪#revero #shawnbaker #Carnivorediet #MeatHeals #HealthCreation   #humanfood #AnimalBased #ZeroCarb #DietCoach  #FatAdapted #Carnivore #sugarfree  ‪

We spend one third of our lives sleeping. But WTF is going on during those hours?! This week, Dr. Gina Poe gives us an A to Zzzz crash course in all things sleep. Dreams, memory, narcolepsy, naps, sleep demons, traveling across time zones, playing video games before bed, how substances like caffeine and alcohol affect our rest—and beyond! Gina Poe is a neuroscientist at UCLA who has worked on the functions of sleep for over 30 years with an independent research laboratory funded by the National Institute of Mental Health for over 20 years. At UCLA she teaches how the brain becomes biased and one can change one's mind through the powerfully plastic state of sleep, winning the UCLA Distinguished Teaching award in 2022 and the US President's 2014 PAESMEM award for mentoring work through the Society for Neuroscience. Dr. Poe counsels on initiatives and funding priorities for the National Institute for Neurological Disorders and Stroke, has authored nearly 200 publications (papers and abstracts), and has appeared on PBS's NOVA and Netflix's The Mind Explained and other television and podcast venues. She and her husband have four children, two grandchildren (with another on the way!), a dog, and a cat. You can follow Dr. Poe on Twitter @doctorpoe, on Instagram @poe.gina, and on LinkedIn at Gina R. Poe. For more information, check out: The National Sleep Foundation Dr. Poe's Brain Research Institute site Dr. Poe's Department site Dr. Poe Lab site Dr. Poe's publications Follow us on Instagram @CuriousWithJVN to join the conversation. Jonathan is on Instagram @JVN. Transcripts for each episode are available at JonathanVanNess.com. Find books from Getting Curious guests at bookshop.org/shop/curiouswithjvn. Our executive producer is Erica Getto. Our producer is Chris McClure. Our associate producer is Allison Weiss. Our engineer is Nathanael McClure. Production support from Julie Carrillo, Samantha Martinez, and Anne Currie. Our theme music is “Freak” by QUIÑ; for more, head to TheQuinCat.com. Curious about bringing your brand to life on the show? Email podcastadsales@sonymusic.com. Learn more about your ad choices. Visit podcastchoices.com/adchoices