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Podcasts

A Podcast by the Tuberous Sclerosis Alliance

A Podcast by the Tuberous Sclerosis Alliance

Location:

United States

Genres:

Podcasts

Description:

A Podcast by the Tuberous Sclerosis Alliance

Twitter:

@tsalliance

Language:

English

Contact:

2406384644


Episodes

Episode 23: Autism Spectrum Disorder in TSC and TACERN

4/30/2021
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 higher the rate in the general population (roughly 1% worldwide). Additionally, there is a very … Continue reading Episode 23: Autism Spectrum Disorder in TSC and TACERN →

Duration:00:24:19

Episode 22: Overcoming Hurdles with Health Plans and Specialty Pharmacies

3/30/2021
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 communicate with specialty pharmacies. This episode is sponsored by Greenwich Biosciences. Disclaimer: Greenwich Biosciences utilized … Continue reading Episode 22: Overcoming Hurdles with Health Plans and Specialty Pharmacies →

Duration:00:44:43

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

2/8/2021
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 Alliance), the Dravet Syndrome Foundation and the Lennox-Gastaut Syndrome (LGS) Foundation, launched the Seizure Action … Continue reading Episode 21: Noema, Basimglurant and a New Clinical Trial for Seizures in TSC →

Duration:00:19:56

Episode 20: The 2021 Virtual March on Capitol Hill

1/29/2021
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 by holding the march virtually. The March on Capitol Hill is the TS Alliance’s annual … Continue reading Episode 20: The 2021 Virtual March on Capitol Hill →

Duration:00:36:11

Episode 19: Infantile Spasms Awareness Week (#ISAW2020)

12/8/2020
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, comes to a close. To learn more about infantile spasms go to www.infantilespasms.org. First, Dan … Continue reading Episode 19: Infantile Spasms Awareness Week (#ISAW2020) →

Duration:00:38:30

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

11/24/2020
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 and Rare Lung Disease Program. We discuss what researchers and clinicians have learned so far … Continue reading Episode 18: Understanding COVID-19’s Impact on Those with TSC & LAM →

Duration:00:19:41

Episode 17: Gene Therapy in TSC

10/30/2020
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 in preclinical mouse models of TSC in which the TSC1 or TSC2 gene are missing. … Continue reading Episode 17: Gene Therapy in TSC →

Duration:00:20:41

Episode 16: COVID-19 and Back to School

8/28/2020
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 pandemic and what rights they have to advocate for the services their kids need. This … Continue reading Episode 16: COVID-19 and Back to School →

Duration:00:53:39

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

7/31/2020
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 SeizureTracker and how it’s advancing both our understanding of TSC and epilepsy. First, Dan talks … Continue reading Episode 15: Managing Behaviors During COVID-19 (Part 2) + A New Partnership with SeizureTracker →

Duration:00:50:17

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

6/30/2020
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 home during the ongoing COVID-19 pandemic. For part one of this conversation, Dan is joined … Continue reading Episode 14: Managing Aggressive and Harmful Behaviors During COVID-19 (Part 1) →

Duration:00:26:51

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

5/31/2020
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 Alliance Director of Government and Global Affairs, to see how they are recognizing TSC Global … Continue reading Episode 13: TSC Global Awareness Month in the Age of COVID-19 →

Duration:01:00:28

Episode 12: Living with TSC During COVID-19

4/26/2020
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) has developed to support the community during the pandemic, and plays clips from past webinars … Continue reading Episode 12: Living with TSC During COVID-19 →

Duration:00:41:54

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

3/31/2020
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 continued funding for the Tuberous Sclerosis Complex Research Program (TSCRP) at the Department of Defense. … Continue reading Episode 11: A #March4TSCresearch Recap & Update on COVID-19 →

Duration:00:33:54

Episode 10: Expanding Coverage and Ensuring Access to Medications

2/26/2020
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 supplemental material for that application, and what this process can teach us about the role … Continue reading Episode 10: Expanding Coverage and Ensuring Access to Medications →

Duration:00:25:49

Episode 9: The State of the TS Alliance

1/22/2020
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 for the organization in 2020, the newest members of the team, and upcoming events at … Continue reading Episode 9: The State of the TS Alliance →

Duration:00:17:54

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

11/16/2019
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, MD, Director of Neurology and Epilepsy at Medical Associates of the Hudson Valley (01:22). … Continue reading Episode 7: Common Parent/Caregiver Challenges and Advocating for Your Health →

Duration:00:48:54

Episode 6: TSC-Associated Neuropsychiatric Disorders (TAND)

10/15/2019
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, otherwise known as TAND. TAND refers to a whole spectrum of neurological manifestations of TSC, … Continue reading Episode 6: TSC-Associated Neuropsychiatric Disorders (TAND) →

Duration:00:33:36

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

9/15/2019
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 Science Center, and the Medical Director of Nephrology at St. Jude’s Children’s Hospital. They discuss … Continue reading Episode 5: TSC Kidney Manifestations & Consensus Guidelines for Surveillance and Treatment →

Duration:00:36:27

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

8/15/2019
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 types of challenges kids with TSC face in the classroom, and what resources and benefits … Continue reading Episode 4: Educational Issues in TSC and How to Advocate for Your Child in School →

Duration:00:23:30

Episode 3: The 2019 International TSC Research Conference

7/16/2019
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, MD, Professor of Medicine at Harvard Medical School and Director of the Center for … Continue reading Episode 3: The 2019 International TSC Research Conference →

Duration:00:37:13