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 support@tscalliance.org or call our support line: 240-463-7250.

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Watch this episode of TSC Now on YouTube: https://youtu.be/YBQP534C75U