a podcast from the TSC Alliance®
Subscribe:.rss.atom.json.md.m3u.pls
Live Last read · last published · next check
Saves to your Listen queue, to pick up on another day or another device.
In a special episode of TSC Now, Dan interviews Bridgett Langstaff, mom to Jude, a 17-year-old living with tuberous sclerosis complex (TSC) and epilepsy. Bridgett shares Jude’s diagnosis story and how they ultimately made their way to Mass General Hospital and Dr. Thiele. She also talks about Jude’s ongoing struggle with seizures, from infantile spasms as a baby, to partial seizures, to tonic…
November is Epilepsy Awareness Month, and to help raise awareness, TSC Now host Dan Klein talks to Starr Phipps, an adult living with drug-resistant epilepsy. She shares her story, including how she faced stigma as a child, how her lack of control over her seizures impacted her emotional and physical well-being, and how continuing to push for treatments changed her life and inspired her to help…
In the first episode of TSC Now in 2025, host Dan Klein tackles the challenging topic of what happens when a clinical trial fails and how failed clinical trials inform future research in tuberous sclerosis complex (TSC). Dan interviews Mary Kay Koenig, MD, Professor of Child Neurology and Associate Vice Chair for Clinical Research at University of Texas McGovern Medical School in Houston and…
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 sclerosis complex (TSC). She then shares the questions parents…
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 in child neurology with a special emphasis on epilepsy.…
2024 marks the 50 th 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 of talking to Shonnie Johnson, a former TSC Alliance board…
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 daughter with TSC, and mom of 2 adults without TSC. “I am an advocate, a wife, a grandma…
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 diagnosed with tuberous sclerosis complex (TSC) when he started having seizures at seven…
In this episode, host Dan Klein learns about Pretola Global Health and Consulting Limited and how they a dvocate 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 4 th edition of the Epilepsy Assessment and Management Course, an online course for physicians in low and middle income…
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. This episode is…
