Seizing Life

This week on Seizing Life®, we revisit several compelling conversations from the past year in our Best of Seizing Life 2023 compilation episode.

This week on Seizing Life® Annette Adkins, who has lived with intractable epilepsy since 2014, discusses the impacts of epilepsy on her professional and personal life, and how it led her to participate in a clinical trial for a new procedure that has brought her seizure freedom.

This week on Seizing Life® we speak with two rare epilepsy organizations, The KCNT1 Epilepsy Foundation and The Cute Syndrome Foundation, in an episode recorded at Epilepsy Awareness Day at Disneyland this past November.

This week on Seizing Life®, in recognition of Infantile Spasms Awareness Week (December 1st – 7th), we speak with epilepsy researcher Dr. Chris Dulla about infantile spasms – what we know, what recent research has revealed, and how current research may lead to better detection and treatments.

This week on Seizing Life® we speak with Dr. Elizabeth Gerard about impacts, challenges, and concerns specific to women living with epilepsy. From puberty to menstruation, contraception, pregnancy, and menopause, Dr. Gerard provides information and insights on managing epilepsy as a woman through all stages of life.

This week on Seizing Life® we speak with Peter Burpee who experienced absence epilepsy in childhood and tonic clonic seizures in his teen years, but has gained seizure control and will be running in the upcoming NYC Marathon to raise money for epilepsy research.

This week on Seizing Life® in observance of SUDEP Action Day on October 18th, we speak with Dr. Richard Goldstein, Associate Professor of Pediatrics at Harvard Medical School, about the program he directs conducting research into both Sudden Unexpected Death in Pediatrics (SUDP) and the grieving process of bereaved parents.

This week on Seizing Life® Kate Kostolansky shares her daughter Charlotte’s infantile spasms diagnosis and treatment journey, and explains how these experiences inspired a children’s book designed to help newly-diagnosed families and those around them better understand infantile spasms.

This week on Seizing Life® we speak with Barbara D’Amora about the life of her son Nicholas, who lived with autism and epilepsy and became an active and inspirational advocate for the autistic community despite being nonverbal. Barbara recalls the early days of Nick’s life and how a program “unlocked” Nick, allowing him to communicate with the world around him and igniting a passion for advocacy t...

This week on Seizing Life®, recent college graduate and CURE Epilepsy summer intern Kiley Flowers joins us to talk about Jeavons syndrome and share her personal journey with this rare form of generalized epilepsy.

This week on Seizing Life® Clare Phelps shares the difficult diagnosis and frustrating treatment journey of her young daughter Sophie, whose epilepsy has so far been treatment resistant.

This week on Seizing Life® Mariah Mayhugh discusses her epilepsy journey, from hiding childhood absence seizures to becoming an active and creative advocate for epilepsy awareness, education, and representation.

This week on Seizing Life®, we speak with Hailey Yoon about the emotional and psychological impacts that childhood epilepsy may have even years after seizures subside.

This week on Seizing Life® Dr. Dave Clarke gives us a thorough overview of the specialists and services available at comprehensive epilepsy centers and offers advice about when and how to access these centers.

This week on Seizing Life® we speak with epilepsy advocates and married couple Tiffany and Chris Kairos about the impact that epilepsy has had on their marriage.

This week on Seizing Life®, father and therapist Bud Hager discusses being the caregiver to a young daughter with a rare and complex medical condition. Bud discusses the daily responsibilities and the overarching emotional journey of parenting a child with a rare disease, and how it has transformed his life in both tangible and philosophical ways.

This week on Seizing Life® Dr. Patrice Jackson-Ayotunde, an organic chemist and Associate Professor of Pharmaceutical Sciences at the University of Maryland Eastern Shore (UMES), discusses her 20+ years of epilepsy drug research and her decade-long epilepsy fundraising efforts.

This week on Seizing Life® we speak with Matt Perrone about his epilepsy onset and treatment journey, the impacts of seizures and medication on his mental health, and how his daughter’s diagnosis at the age of four spurred him to create EpiPalooza, a multi-band concert aimed at raising awareness and funds for epilepsy research.

This week on Seizing Life® we welcome Lucretia Long to the podcast to discuss the present and future of epilepsy care and treatment. Lucretia is an Advanced Practice Registered Nurse (APRN) and a Certified Nurse Practitioner (CNP) at The Ohio State University Wexner Medical Center who has been working with epilepsy patients for over 30 years. She shares her vast experience and perspective on a ran...

This week on Seizing Life® we speak with Reid Rainwater and his father Ryan about the sudden onset of epilepsy that Reid experienced as a freshman in high school, his journey to controlling tonic-clonic seizures, and how epilepsy and stigma have impacted his education and tennis career as one of the top young players in Oklahoma.

This week on Seizing Life® mother and epilepsy advocate Collen Jendreas joins us to share her young son Owen’s epilepsy journey from initial onset to a diagnosis of Lenox Gastaut Syndrome (LGS), and discuss how two particular interventions have made a significant impact on Owen’s quality of life.

This week on Seizing Life Susan Axelrod, CURE Epilepsy founder, and Barbara Kelly, the founding Research Chair, discuss the past, present, and future of the organization and epilepsy research.

This week on Seizing Life® Carmen Zannier shares her 35 year epilepsy journey, discusses her recent decision to go public with her diagnosis, and explains how her passion for mountain climbing has led her to raising funds for epilepsy research.

This week on Seizing Life®, Christy and Lawrence Tsane share daughter Christiane’s epilepsy diagnosis and explain how they manage her seizures while nurturing her love of competitive running.

This week on Seizing Life® Ara Carbonneau shares her difficult and remarkable decades-long journey to an epilepsy diagnosis. Years after recovering from meningitis as an infant, Ara began experiencing seizures as a teenager. Yet, she continued to pursue her dreams, attending college and graduate school, earning her teaching certificate and masters degree, getting published and building a career.