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In this episode of TSC Now host Dan Klein is joined by Bruce Hainan and Jim Kotsailidis from Nobelpharma America, LLC and Shelly Meitzler, TSC Alliance Director of Outreach and Support, and mom to Ashlin and Mason with TSC. Shelly shares her experience looking for housing for her eldest daughter Ashlin, a dependent adult with tuberous … Continue reading Navigating Housing Options for Dependent Adults with TSC (sponsored by Nobelpharma America) →
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In honor of National Epilepsy Awareness Month, TSC Now host Dan Klein is joined by Steven Wolf, MD, Director at the TSC Clinic Without Walls serving NYC, Westchester, Hudson Valley & Connecticut. Dr. Wolf also serves as the Director of Pediatric Epilepsy at Boston Children’s Health Physicians of New York and Connecticut. Dr. Wolf specializes … Continue reading Drug-Resistant and Undertreated Epilepsy (sponsored by LivaNova) →
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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 who helped shape this organization. In this episode host Dan Klein had the distinct pleasure … Continue reading 50th Anniversary Spotlight – Shonnie Johnson →
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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 as a mother of an adult daughter with TSC, honorary mother of a 2nd adult … Continue reading Episode 49: Community Spotlight – Gloria Triebenbach →
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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 in 2012 and welcomed their TSC Warrior Jackson to the world in 2019. Jackson was … Continue reading Episode 48: Community Spotlight – Kristen Moore →
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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 partnered with Pretola on the 4th edition of the Epilepsy Assessment and Management Course, an … Continue reading Episode 47: Closing the Epilepsy Treatment Gap Worldwide →
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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 life and shares some treatment options beyond medication, including surgery, dietary therapies and neuromodulation devices. … Continue reading Episode 46: Understanding drug resistant epilepsy and treatment options →
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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 array of specialties and the entire spectrum from basic science to clinical research. The comprehensive … Continue reading Episode 45: The 2023 International TSC Research Conference →
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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 is not medical advice and is not intended to recommend or suggest a course of … Continue reading Episode 44: Rare Conversations →
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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 can prevent seizures and epilepsy in children diagnosed with TSC. The study is currently enrolling … Continue reading Episode 43: The TSC-STEPS Trial →
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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 that are distinct from a person’s usual seizure pattern. Seizure clusters may also be called … Continue reading Episode 42: Understanding Seizure Clusters →
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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 ones. First, Dan chats with Kelly Piacenti, Head of Special Care at MassMutual (01:24). Kelly … Continue reading Episode 41: Help Today, Help Tomorrow →
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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 those of the speakers individually based on their experience and do not reflect the … Continue reading Episode 40: Totally Super Cool! →
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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 speaks to inspiring leaders who have shaped the TSC Alliance’s past and will continue to … Continue reading Episode 39: Inspiring a World TSC Community →
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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 sclerosis complex (TSC) community. On Thursday, July 28, during the opening of the 2022 World … Continue reading Episode 38: Galvanizing a World TSC Community →
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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 of the Division of Pulmonary, Critical Care and Sleep Medicine at University of Cincinnati … Continue reading Episode 37: The MILED Trial and the Future of LAM Research →
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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 open until the end of the year, help us reach our goal at stepforwardtocuretsc.org. You can … Continue reading Episode 36: TSC Awareness Month →
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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 Neurology and Las Madrinas Chair at the Children’s Hospital of Los Angeles and Professor of … Continue reading Episode 35: The Past, Present and Future of Autism Research in TSC →
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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 amazing event from some dedicated volunteers, and interviews one of this year’s honorees. First, Dan … Continue reading Episode 34: Celebrating 20 Years of Comedy for a Cure →
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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 and Lennox-Gastaut Syndrome (LGS) Foundation, launched the Seizure Action Plan (SAP) Coalition to educate people … Continue reading Episode 33: Noema, Basimglurant and a New Clinical Trial for Seizures in TSC →
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