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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 clonic seizures as he started going through puberty, and she details their journey to achieve seizure control through multiple medications, the ketogenic diet, and surgery. Finally, she shares what it’s like as a parent to witness a prolonged seizure (one lasting longer than 3 minutes) and how and when they decide to administer rescue medication to stop a seizure. This podcast was sponsored by UCB Biopharma, in an effort to raise awareness of prolonged seizures. UCB was not involved in the content development for this podcast. UCB is currently running the STARS study, a clinical trial researching an investigational medication for people who experience prolonged epileptic seizures (i.e. lasting more than 3 minutes) who are over the age of 12. The STARS Study is testing an inhaler containing an investigational drug that has been designed to potentially stop a prolonged seizure once it has begun. If you are interested in learning more, visit www.starsepilepsystudy.com to learn more or contact a Patient Navigator to better understand this study at 470-523-2502.

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 others. This episode is sponsored by LivaNova. The opinions expressed are those of the host and guest speaker individually and do not reflect the policies or positions of Livanova. The following content is for informational purposes only. It is not medical advice and is not intended to recommend or suggest a course of treatment or treatment options. Be sure to talk to your doctor about your symptoms and conditions.

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 Co-Director of the TSC Center of Excellence at the University of Texas Health Science Center at Houston. Dr. Koenig provides insights on what risks are involved in participating in a clinical trial and what questions caretakers should ask during the consenting process, how trials can fail and what happens after a trial ends, how families participating in a failed trial can continue to receive medication in certain situations, and how all trials, regardless of their result, help move our understanding of TSC forward. Interested in learning more about TSC clinical trials? Learn more about available trials and how to enroll: https://www.tscalliance.org/get-involved/participate-in-research/ If you or your loved one is struggling to access medication you need please do not hesitate to reach out to our support navigators. You can email them at [email protected] or call our support line: 240-463-7250. Subscribe to TSC Now: https://tsc-now.blubrry.net/subscribe-to-podcast/ Watch this episode of TSC Now on YouTube: https://youtu.be/YBQP534C75U

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 should ask when vetting potential housing options for their children. Bruce and Jim share additional resources parents can use to help them find the options available to them and talk about the work Nobelpharma is doing meeting with both residential housing facilities to educate them about TSC and with TSC clinics to develop heat maps of available resources and alleviate some of the burden parents shoulder when looking for options. This episode is sponsored by Nobelpharma America LLC. The opinions expressed are those of the host and guest speakers 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 treatment or treatment options. Be sure to talk to your doctor about your symptoms and conditions.

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. Dr. Wolf provides an overview of drug-resistant epilepsy (DRE), outlines the risks of under or untreated seizures, including sudden unexpected death in epilepsy (SUDEP), and talks about treatment options beyond medication. Additional Resources: Epilepsy/seizure disorders in TSC: https://www.tscalliance.org/understanding-tsc/clinical-manifestations/brain-neurological-function/epilepsy-seizure-disorders/ Child Neurology Foundation Epilepsy Education Hub: https://www.childneurologyfoundation.org/epilepsy-education-hub/?gad_source=1&gclid=Cj0KCQiAo5u6BhDJARIsAAVoDWsnleWiozC7siAXUMT7DaEkFtvnH328mEN4WprD595yT7t8IXDsGQEaAozfEALw_wcB Epilepsy Foundation: https://www.epilepsy.com/ LivaNova sponsored this episode. The opinions expressed are those of our guest speakers and host individually and do not reflect the policies or positions of LivaNova. The following content is for informational purposes only. It is not medical advice and is not intended to recommend or suggest a course of treatment or treatment options. Be sure to talk to your doctor about your symptoms and conditions.

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 of talking to Shonnie Johnson, a former TSC Alliance board chair, longtime volunteer and supporter of the organization, and grandmother to Annie Johnson, an adult living with TSC. Learn more about the five-decade history of the TSC Alliance: https://www.tscalliance.org/spotlight-on-tsc-alliance/ Join us in celebrating 50 years by attending our 50th Anniversary Gala in New York City on Friday, October 25, 2024: https://tscalliance.schoolauction.net/50forward/ Can’t make it to the Gala? You can still be part of recognizing 50 years by purchasing a tribute ad or honorary name listing in the 50th Anniversary Commemorative Program Book: https://tscalliance.schoolauction.net/50forward/register/ticket_sales

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 and a nurse. Our family knows good days and we know terrible, horrible days that start with the worst that tuberous sclerosis complex (TSC) can hand out. It takes a huge dedicated team of people to work on issues as big as TSC and my goal is to not stop until TSC is defeated. My family and I give everything, but up!” Gloria was honored as a Volunteer of the Year at the Volunteer Appreciation Celebration in Washington, DC, part of the TSC Alliance’s annual Volunteer Leadership Summit.

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 weeks old. He underwent laser ablation brain surgery at 17 months. Kristen is a fierce advocate for Jackson and is committed to raising awareness, advocating and fundraising for a better future, services, research, and ultimately a cure, for him and others in the TSC community. Earlier this year, Kristen was honored as a Volunteer of the Year at the Volunteer Appreciation Celebration in Washington, DC, part of the TSC Alliance’s annual Volunteer Leadership Summit. Kristen shares her family’s diagnostic journey, what motivated her to volunteer, and how the TSC community helped her navigate the waves of this disease.

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 online course for physicians in low and middle income countries around the world to learn about epilepsy and related comorbidities. This years course featured a lesson on tuberous sclerosis complex (TSC) and featured presentations by Dr. Pradnya Gadgil in India, Professor Anna Jansen from Belgium and Professor Petrus De Vries from South Africa.  Dan talks to Tolu Olaniyan, Bsc LD Nursing, MSc Epilepsy, Founder and CEO of Pretola. She shares how her upbringing inspired her to start the organization, what some of the major barriers are to treatment in low income countries and how through educating frontline physicians she is trying to overcome those barriers. Learn more about Pretola Global Health Consulting Limited: https://www.pretolaghc.net/

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 sponsored by LivaNova. Additional resources TSC Alliance: https://www.tscalliance.org/about-tsc/signs-and-symptoms-of-tsc/brain-and-neurological-function/epilepsy-and-seizure-disorders/ Epilepsy Foundation of America: https://www.epilepsy.com/ International League Against Epilepsy: https://www.ilae.org/ Child Neurology Consultants of Austin: https://www.childneurotx.com/conditions/epilepsy-seizures/ This episode is sponsored by:

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 three-day agenda included plenary sessions, breakout group discussions, a poster session and reception, as well as an Early Career Research Symposium during which early-stage investigators had the opportunity to report on their cutting-edge research, network, and learn about the diverse paths forward in the field of TSC research. To learn more about how the conference came together, what was discussed and what are some of the outcomes coming from those discussions Dan interviewed the two Co-Chairs of the conference. First, Dan spoke with with Shafali Jeste, MD, (01:42) Professor of Pediatrics and Neurology at the USC Keck School of Medicine, and the Las Madrinas Chair, Chief of Neurology and Co-Director of the Neurological Institute at the Children’s Hospital, Los Angeles. They discuss the role of the Co-Chair in the planning and execution of the conference, how bringing in outside experts create new avenues for research and collaboration, and how recent clinical trials may provide a blueprint for the standard surveillance and care for infants with tuberous sclerosis complex (TSC). Next, Dan talks to Rebecca Ihrie, PhD, (14:41) Associate Professor, Cell & Developmental Biology and Neurological Surgery, Vanderbilt University School of Medicine. She shares how basic scientists benefit from interactions with clinical researchers and the TSC community, how new techniques cell biology may allow for more targeted drug testing and how participation in the conference by early-career researchers helps them form connections and determine their future path in research. Learn more about the 2023 International TSC Research Conference by downloading the program book.

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 treatment or treatment options. Be sure to talk to your doctor about your symptoms and conditions. In this episode of TSC Now, Dan learns about the findings of an adult panel hosted by Nobelpharma America on Rare Disease Day. He also connects with an adult with tuberous sclerosis complex (TSC) who shares her story. First, Dan chats with Justine Ravindranath, Commercial Operations Manager at Nobelpharma America (01:37). On Rare Disease Day 2023, Nobelpharma sponsored a panel discussion with a few young adults who have been diagnosed with TSC. One goal of that event was to shed light on some of the challenges young people encounter as they transition into adulthood. Justine talks about how panelists emphasized the importance of a strong support system and stability to navigate these challenges. Finally, they talk about resources available to young adults with TSC, including Face Forward with TSC, a website created by Nobelpharma America and Totally Super Cool, a children’s book about living with TSC that is available digitally on the Face Forward with TSC site. Next, Dan connects with Iris Mustich (16:07), an adult with TSC and TSC Alliance volunteer who was awarded the Keith Hall Distinguished Leadership Award during the Volunteer Leadership Celebration earlier this year. She shares her experience growing up with TSC, connecting with other adults during the pandemic and what ultimately inspired her to volunteer. She also talks about how it felt being honored by the community, and how she applies both her lived experience and her professional background to support other adults and work to address the unmet needs of the adult community. Resources and Links: Learn more about Face Forward with TSC: https://faceforwardwithtsc.com/ Request a digital copy of Totally Super Cool: https://faceforwardwithtsc.com/resources/ Download the Navigating the transition years of TSC Guide: https://www.tscalliance.org/wp-content/uploads/2016/11/NavigatingTransitionYearsOfTSC11-22WEB.pdf Learn about resources for Young Adults from the TSC Alliance: https://www.tscalliance.org/individuals-families/young-adults/ Learn about our Adult Initiative and resources for adults with TSC: https://www.tscalliance.org/individuals-families/adults/ Register for the 2023 Step Forward to Cure TSC Global Hybrid Walk-Run-Ride: https://give.tscalliance.org/event/2023-step-forward-to-cure-tsc-r-global-hybrid-walk-run-ride/e433629 Learn about the 2023 Regional TSC & LAM Conference Series: https://www.tscalliance.org/individuals-families/2023conferences/ Sponsored by:

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 infants diagnosed with TSC who are at risk of developing epilepsy. \ Dan interviews Darcy Krueger, MD, PhD, Director of the TSC Center of Excellence at Cincinnati Children’s Hospital and member of the TSC Alliance Board of Directors (0:59). Dr. Krueger provides an overview of the trial, the eligibility requirements, risks and benefits to participation, and what participation entails for families in terms of site visits and tests. He also discusses how the trial builds off findings of earlier intervention trials and may be part of a greater shift in the paradigm of care for those with TSC. Finally, he provides information about other upcoming and ongoing trials looking for older participants, and encourages everyone listening to help raise awareness of these important trials to help recruit participants and move research forward. Resources and Links Learn more about the TSC-STEPS trial: https://tscsteps.org/ Learn more about the MILED trial: https://www.thelamfoundation.org/MILED Learn more about the Developmental Synaptopathies Consortium: https://www1.rarediseasesnetwork.org/cms/dsc Learn more about the Bcureful Travel Fund at the TSC Alliance: https://www.tscalliance.org/individuals-families/bcureful-travel-lodging-assistance/ Learn more about clinical trial participation: https://www.tscalliance.org/individuals-families/tsc-clinical-trials/ Check out TSC clinical trials that are currently recruiting: https://trials.tscalliance.org/  

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 acute repetitive seizures, serial seizures, crescendo seizures or seizure flurries and in every case they are an emergency that often require rescue medication, calling for emergency response or both. Dan is joined by James Wheless, MD, (01:33) Director of the Neuroscience Institute and Comprehensive Epilepsy Program and Co-Director of the TSC Center of Excellence at Le Bonheur Children’s Hospital, and Professor and Chief of Pediatric Neurology at University of Tennessee Health Science Center. Dr. Wheless describes what seizure clusters are, why they are a medical emergency and how new rescue medications can provide peace of mind to people who suffer from seizure clusters. He also discusses the importance of creating a seizure action plan and how to best implement and refine that plan to make sure it is working. Finally, he emphasizes the importance for parents to meet with their neurologist as soon as they notice irregular seizure activity and to not hesitate to use rescue medication when their loved one experiences an irregular change in the frequency or severity of their seizures. Resources and Links Learn more about International Epilepsy Day: https://internationalepilepsyday.org/ Learn more about Seizure Action Plans and Seizure Action Plan Awareness Week: https://seizureactionplans.org/ This episode is sponsored by:

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 shares how her experience managing care for her son with special needs helps her support other parents as they make legal decisions for their children. She debunks common myths about the cost of financial planning, when to start and the need for a special needs trust. She also talks about the importance of a letter of intent as a first step to making a plan and shares what information should be included in a letter of intent. To learn what SpecialCare at MassMutual can do for your family, visit their website or contact Kelly Piacenti at [email protected]. You can get additional resources for estate and financial planning  in the Resources section of the TSC Navigator. Next, Dan talks to Megan Cortjens, Executive Director of Our Place (27:37). Our Place is an online community where families with disabilities can connect with other families, share their experiences, find resources in their community, and get assistance from experts on a wide range of topics, including taxes, IEPs, travel, waiver applications and more. Megan shares how the site came to be and she is trying to break silos of information by creating a single place where the disability community can find resources on whatever their biggest challenges are. She shares about some of the major features of the site, including the Knowledge Center featuring easy-to-understand videos on various topics, and the Medicaid map where users can find Medicaid providers in their area. You can learn more about Our Place by going to joinourplace.com. Links and Resources Learn more about SpecialCare and MassMutual: https://www.massmutual.com/lp/specialcare Watch a Lunch & Learn interview with Kelly: https://youtu.be/6lfttMG0L2s Watch a presentation from Kelly on Guardianship Options, Financial Planning and Government Benefits from our 2021 E-Webinar Series: https://www.youtube.com/watch?v=18ppVaLQZko&ab_channel=TSCAlliance Learn more about Our Place: https://www.joinourplace.com/ Review our aging caregiver checklist: https://www.tscalliance.org/wp-content/uploads/2021/09/Aging-Caregiver-Checklist-.pdf Explore our Navigation Guides to understand what to expect at each stage of life: https://www.tscalliance.org/individuals-families/publicationsandsample-letters/ Learn more about special needs planning from the Special Needs Alliance: https://www.specialneedsalliance.org/ Learn more about special needs trusts: https://www.natlawreview.com/article/understanding-special-needs-trusts This podcast is sponsored by: