TSC Now

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:

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

This episode is sponsored by: