TSC Now

TSC Now episodes:

• 06.27.2024

  50th Anniversary Spotlight – Shonnie Johnson

  2024 marks the 50th anniversary of the TSC Alliance, which was founded by four moms in Southern California in 1974. To celebrate the anniversary of the organization, throughout the year TSC Now will feature interviews with some of the people...

  
• 12.29.2023

  Episode 49: Community Spotlight – Gloria Triebenbach

  In a final bonus episode in 2023, host Dan Klein connects with Gloria Triebenbach, Chair of the TSC Alliance of the Pacific Northwest and Step Forward to Cure TSC Walk Chair for the walk in Renton, Washington. Gloria describes herself...

  
• 12.26.2023

  Episode 48: Community Spotlight – Kristen Moore

  In a bonus episode, host Dan Klein connects with Kristen Moore, Vice Chair of the TSC Alliance of the Carolinas and Step Forward to Cure TSC Walk Chair for the Carolinas Walk. Kristen and her husband, Douglas, moved to Charlotte...

  
• 12.22.2023

  Episode 47: Closing the Epilepsy Treatment Gap Worldwide

  In this episode, host Dan Klein learns about Pretola Global Health and Consulting Limited and how they advocate for a better future for people living with epilepsy, learning disability and autism around the world. Earlier this year, the TSC Alliance...

  
• 10.27.2023

  Episode 46: Understanding drug resistant epilepsy and treatment options

  In this episode of TSC Now, host Dan Klein interviews Karen Keough, MD, a child neurologist at Child Neurology Consultants of Austin. Dr. Keough defines drug resistant epilepsy (DRE), explains how lack of seizure control can impact someone’s quality of...

  
• 10.19.2023

  Episode 45: The 2023 International TSC Research Conference

  On this episode of TSC Now, host Dan Klein recaps the 2023 International TSC Research Conference: Fueling the Future held September 7-9, 2023, in Washington, DC. The conference brought together over 200 researchers from around the world representing a wide...

  
• 04.20.2023

  Episode 44: Rare Conversations

  Disclaimer: This episode is sponsored by Nobelpharma America LLC. The opinions expressed are those of the host and guest speaker individually and do not reflect the policies or positions of Nobelpharma. The following content is for informational purposes only. It...

  
• 03.15.2023

  Episode 43: The TSC-STEPS Trial

  In this episode of TSC Now, host Dan Klein dives deep on a new clinical trial in tuberous sclerosis complex (TSC) called TSC-STEPS. TSC-STEPS is a study to learn more about a drug known as Sirolimus and determine if it...

  
• 02.03.2023

  Episode 42: Understanding Seizure Clusters

  In the first episode of TSC Now in 2023, host Dan Klein recognizes International Epilepsy Day (February 13, 2023) and Seizure Action Plan Awareness Week (February 13-20, 2023) by learning about seizure clusters, which are episodes of frequent seizure activity...

  
• 12.27.2022

  Episode 41: Help Today, Help Tomorrow

  In the final episode of TSC Now in 2022, host Dan Klein connects with two incredible advocates for individuals with disabilities and learns how families can find support to help them with both everyday and long-term decisions for their loved...

  
• 09.09.2022

  Episode 40: Totally Super Cool!

  In a special bonus episode of TSC Now, host Dan Klein learns about a new children’s book called Totally Super Cool, which was developed by Nobelpharma America, LLC. This Podcast is being sponsored by Nobelpharma America LLC. The opinions expressed are...

  
• 09.02.2022

  Episode 39: Inspiring a World TSC Community

  In a special two-part episode of TSC Now, host Dan Klein recaps the 2022 World TSC Conference, which was held in Dallas, Texas July 28-31, 2022. In part two, Dan explores the history of tuberous sclerosis complex (TSC) conferences and...

  
• 08.26.2022

  Episode 38: Galvanizing a World TSC Community

  In a special two-part episode of TSC Now, host Dan Klein recaps the 2022 World TSC Conference, which was held in Dallas, Texas July 28-31, 2022. In part one Dan talks to two inspiring and visionary leaders in the tuberous...

  
• 07.01.2022

  Episode 37: The MILED Trial and the Future of LAM Research

  In this episode of TSC Now, host Dan Klein celebrates Worldwide LAM Awareness Month (#WWLAM) and raises awareness of lymphanhgioleiomyomatosis (LAM) and a pivotal clinical trial in LAM that is enrolling right now. Dan interviews Frank McCormack, MD, Professor and Director...

  
• 06.08.2022

  Episode 36: TSC Awareness Month

  In this episode of TSC Now, host Dan Klein recognizes TSC Awareness Month and the 10th Annual TSC Global Awareness Day! He starts by providing an update on the Step Forward to Cure TSC® Global Hybrid Walk-Run-Ride. Fundraising pages are...

  
• 04.30.2022

  Episode 35: The Past, Present and Future of Autism Research in TSC

  In this episode of TSC Now, host Dan Klein recognizes World Autism Month by taking a deep dive on the past, present and future of autism spectrum disorder (ASD) research in TSC. Dan talks to Shafali Jeste, MD, Chief of...

  
• 04.02.2022

  Episode 34: Celebrating 20 Years of Comedy for a Cure

  In this episode of TSC Now, host Dan Klein recognizes the 20th Anniversary Comedy for a Cure® on Sunday, April 3 at the Avalon in Hollywood, California! To kick off the celebration, Dan learns about the past and present of this...

  
• 02.07.2022

  Episode 33: Noema, Basimglurant and a New Clinical Trial for Seizures in TSC

  In a very special early episode of TSC Now, host Dan Klein recognizes International #EpilepsyDay and the kickoff of the second annual Seizure Action Plan Awareness Week. In November 2020, a collaboration of three non-profit organizations, the TSC Alliance, Dravet Syndrome Foundation...

  
• 01.28.2022

  Episode 32: The 2022 World TSC Conference

  In the first episode of TSC Now in 2022, host Dan Klein provides an overview of the upcoming 2022 World TSC Conference, co-hosted by Tuberous Sclerosis Complex International (TSCi), which will be held July 28-31, 2022 and will bring together...

  
• 12.22.2021

  Episode 31: The Present and Future of TSC & LAM Research

  In the final episode of TSC Now in 2021, host Dan Klein recaps the 2021 Virtual International TSC & LAM Research Conference: Driving Discoveries Beyond Boundaries, presented by Greenwich Biosciences and the Rothberg Institute of Childhood Diseases and co-hosted by the TSC...

  
• 11.30.2021

  Episode 30: Infantile Spasms Awareness Week 2021

  In Episode 30 of TSC Now, host Dan Klein kicks of Infantile Spams Awareness Week 2021, an initiative from the Infantile Spasms Action Network (ISAN) that runs December 1-7. ISAN is a collaboration of 32 national and international entities, including...

  
• 10.29.2021

  Episode 29: The TSC Navigator

  In Episode 29 of TSC Now, host Dan Klein highlights TSC Navigator, an easy-to-use, interactive online tool to help guide individuals and families through the complexities of tuberous sclerosis complex (TSC) across the lifespan, proactively manage their care and live...

  
• 10.01.2021

  Episode 28: Comedy for a Cure® 2021!

  In a very special episode of TSC Now, host Dan Klein provides a sneak peek of the 19.5 Annual Comedy for a Cure® on Sunday October 17 at 7:30 pm Eastern/ 4:30 pm Pacific! This will be a hybrid event,...

  
• 09.01.2021

  Episode 27: Going Back to School and Caring for the Caregiver

  In Episode 27 of TSC Now, host Dan Klein learns how parents can prepare for the start of a new school year despite the ongoing pandemic. Dan also talks to a licensed professional counselor to get advice on how parents and...

  
• 07.29.2021

  Episode 26: The Road to Newborn Screening in TSC

  In Episode 26 of TSC Now, host Dan Klein takes a deep dive into one of the newer and exciting frontiers in TSC research: Newborn Screening. Last Fall, the TSC Alliance hosted an Innovation Workshop that brought together TSC researchers,...

  
• 06.30.2021

  Episode 25: Lymphangioleiomyomatosis & Worldwide LAM Awareness Month (#WWLAM)

  In Episode 25 of TSC Now, host Dan Klein recognizes Worldwide LAM Awareness Month (#WWLAM) by focusing on lymphangioleiomyomatosis (LAM), a rare lung disease affecting women that is characterized by an abnormal growth of smooth muscle cells, especially in the...

  
• 05.29.2021

  Episode 24: Achieving Universal Health Coverage and Driving Innovative Research Through Global Collaboration

  It’s the two-year anniversary of TSC Now and we’re celebrating with a new name, the TSC Alliance! If you missed our announcement on May 16, the Tuberous Sclerosis Alliance has changed our name to the TSC Alliance to reflect how...

  
• 05.01.2021

  Episode 23: Autism Spectrum Disorder in TSC and TACERN

  In Episode 23 of TSC Now, host Dan Klein recognizes World Autism Month and Autism Acceptance Month by learning more about autism spectrum disorder (ASD) in tuberous sclerosis complex (TSC). ASD occurs in nearly 50% of children with TSC, significantly...

  
• 03.30.2021

  Episode 22: Overcoming Hurdles with Health Plans and Specialty Pharmacies

  In Episode 22 of TSC Now, host Dan Klein explores overcoming hurdles in healthcare, specifically to help parents/caregivers and individuals with tuberous sclerosis complex (TSC) navigate issues with access to medications, changes to their health plans and how to best...

  
• 02.08.2021

  Episode 21: Noema, Basimglurant and a New Clinical Trial for Seizures in TSC

  In a very special early episode of TSC Now, host Dan Klein recognizes International #EpilepsyDay and the first day of the first-ever Seizure Action Plan Awareness Week. In November, a collaboration of three non-profit organizations, the Tuberous Sclerosis Alliance (TS...

  
• 01.29.2021

  Episode 20: The 2021 Virtual March on Capitol Hill

  In the first episode of TSC Now, host Dan Klein dives deep on the upcoming Virtual March on Capitol Hill taking place March 1-5, 2021. Due to the ongoing COVID-19 pandemic, the TS Alliance has decided to protect our volunteers...

  
• 12.08.2020

  Episode 19: Infantile Spasms Awareness Week (#ISAW2020)

  In a very special early edition of TSC Now, host Dan Klein explores the topic of infantile spasms (IS) as Infantile Spasms Awareness Week (ISAW), held annually December 1-7 to raise awareness of IS with both parents/caregivers and frontline physicians,...

  
• 11.24.2020

  Episode 18: Understanding COVID-19’s Impact on Those with TSC & LAM

  In episode 18 of TSC Now, host Dan Klein talks to Nishant Gupta, MD, Associate Professor in the Division of Pulmonology, Critical Care and Sleep Medicine at the University of Cincinnati where he serves as the Director of the Interstitial...

  
• 10.31.2020

  Episode 17: Gene Therapy in TSC

  In episode 17 of TSC Now, host Dan Klein talks to Xandra Breakefield, PhD, Professor of Neurology at Harvard Medical School and a geneticist, specializing in neurology & tadiology at Massachusetts General Hospital. Dr. Breakefield’s research focuses on gene therapy...

  
• 08.28.2020

  Episode 16: COVID-19 and Back to School

  In episode 16 of TSC Now, host Dan Klein talks to two of the TS Alliance’s Education Parent Mentors to better understand how parents should approach making the decision on sending their kids back to school during the ongoing COVID-19...

  
• 08.01.2020

  Episode 15: Managing Behaviors During COVID-19 (Part 2) + A New Partnership with SeizureTracker

  In episode 15 of TSC Now, host Dan Klein continues exploring how to manage harmful and disruptive behaviors associated with TSC-associated neuropsychiatric disorders (TAND) during the ongoing COVID-19 pandemic. Then he explores a new partnership between the TS Alliance and...

  
• 07.01.2020

  Episode 14: Managing Aggressive and Harmful Behaviors During COVID-19 (Part 1)

  In episode 14 of TSC Now, host Dan Klein begins the first of an important two-part discussion focused on how parents can begin to address aggressive and harmful behaviors associated with TSC-associated neuropsychiatric disorders (TAND), while continuing to shelter at...

  
• 05.31.2020

  Episode 13: TSC Global Awareness Month in the Age of COVID-19

  In episode 13 of TSC Now, host Dan Klein celebrates TSC Awareness Month and one full year of podcasting by once again reaching out to some of the Tuberous Sclerosis Alliance’s international partners with the help of Katie Smith, TS...

  
• 04.26.2020

  Episode 12: Living with TSC During COVID-19

  In episode 12 of TSC Now, host Dan Klein does a deep dive on the ongoing COVID-19 crisis and its impact on the tuberous sclerosis complex (TSC) community. Throughout the episode he shares resources the Tuberous Sclerosis Alliance (TS Alliance)...

  
• 03.31.2020

  Episode 11: A #March4TSCresearch Recap & Update on COVID-19

  In episode 11 of TSC Now, host Dan Klein recaps our annual March on Capitol Hill, which took place on March 4, 2020 in Washington, DC and brought together more than 100 volunteers from across the country to advocate for...

  
• 02.26.2020

  Episode 10: Expanding Coverage and Ensuring Access to Medications

  In episode 10 of TSC Now, host Dan Klein talks to Darcy Krueger, MD, PhD, TSC Clinic Director at Cincinnati Children’s Hospital. They discuss the recent FDA approval of the Sabril label expansion, the study he led that served as...

  
• 01.22.2020

  Episode 9: The State of the TS Alliance

  In episode 9 of TSC Now, host Dan Klein talks to Tuberous Sclerosis Alliance President and Chief Executive Officer Kari Luther Rosbeck. They discuss her favorite memories from the organization’s 45th anniversary year in 2019, the major goals and initiatives...

  
• 12.16.2019

  Episode 8: Excerpts from AES and the Current State of Epilepsy Research

  In the eighth episode of TSC Now, host Dan Klein catches up with TS Alliance partners at the annual American Epilepsy Society Meeting (AES), the largest gathering on epilepsy in the world, which was held December 6-10 in Baltimore. Seizures...

  
• 11.16.2019

  Episode 7: Common Parent/Caregiver Challenges and Advocating for Your Health

  In the seventh episode of TSC Now, host Dan Klein explores common challenges parents, caregivers and those affected by tuberous sclerosis complex (TSC) face when managing their health and seeking care from physicians. First, he has a conversation with Paul Mullin,...

  
• 10.15.2019

  Episode 6: TSC-Associated Neuropsychiatric Disorders (TAND)

  In episode 6 of TSCnow, host Dan Klein talks to Petrus de Vries, MBChB, MRCPsych, PhD, Sue Struengmann Professor of Child and Adolescent Psychiatry at the University of Capetown in South Africa. They discuss tuberous sclerosis complex (TSC)-associated neuropsychiatric disorders,...

  
• 09.15.2019

  Episode 5: TSC Kidney Manifestations & Consensus Guidelines for Surveillance and Treatment

  In episode 5 of TSC Now, Dan Klein talks to Dr. John Bissler, MD, Clinic Director of the Tuberous Sclerosis Complex Center of Excellence located at Le Bonheur Children’s Hospital, Director of Pediatric Nephrology at the University of Tennessee Health...

  
• 08.16.2019

  Episode 4: Educational Issues in TSC and How to Advocate for Your Child in School

  In the fourth episode of TSC Now, host Dan Klein talks to Lilian Ansari, MS, Special Needs Advocate, Co-Chair of the TS Alliance of Northern California and Education Parent Mentor. They discuss why she volunteered as an Education Parent Mentor, what...

  
• 07.16.2019

  Episode 3: The 2019 International TSC Research Conference

  In the third episode of TSC Now, host Dan Klein, Director of Digital Platforms for the Tuberous Sclerosis Alliance, talks to the two co-chairs of the 2019 International TSC Research Conference: Changing the Course of TSC. First Dan interviews Dr. Elizabeth (Lisa) Henske,...

  
• 06.15.2019

  Episode 2: Epilepsy in TSC and Laser Ablation Surgery with Dr. Daniel Curry

  In the second episode of TSC Now host Dan Klein talks to Dr. Daniel Curry, Director of  Functional Neurosurgery and Epilepsy Surgery at Texas Children’s Hospital in Houston. They discuss how he became a neurosurgeon, the development of laser ablation...

  
• 05.15.2019

  Episode 1: TSC Global Day, 45th Anniversary and the Future of TSC Research

  Welcome to the debut episode of TSC Now, a podcast from the Tuberous Sclerosis Alliance! In this episode Dan Klein, Director of Digital Platforms, talked to Jennifer Flinn from TS Canada ST, Eva Schoeters from Be-TSC in Belgium, and Rahul...