Seizing Life

Landis Wiedner shares her journey with adult-onset epilepsy after being diagnosed at the age of thirty-two. She describes how seizures impacted her life and work, explains how a stay in and epilepsy monitoring unit led to a life-changing medication change, and shares her experiences dating with epilepsy.

Comedian, actress, and podcaster Stanzi Potenza shares her experiences growing up and living with epilepsy while pursuing her dreams of a career in entertainment.

Dr. Elinor Ben-Menachem, epileptologist, researcher and professor at Sweden’s University of Gothenburg, shares insights and experiences from her 40-plus years working with clinical trials and providing care to refractory epilepsy patients.

Journalist Lauren Aguirre and Dr. Elizabeth Thiele, the authors of the recently published “Epilepsy for Dummies,” discuss their collaboration and explain why their perspectives as epilepsy patient/parent and provider were essential in creating a reliable resource for those living with epilepsy and those who love them.

Dr. Kendra Cagniart shares her son’s journey with epilepsy, from a traumatic birth in which he arrived in status epilepticus through his current period of seizure freedom at the age of 9. This is an amazing and ultimately hopeful journey of a young boy living with epilepsy.

In honor of SUDEP Action Day on Wednesday, October 15th, we speak with Maria Teresa Ioannou of the Joanna Sophia Foundation who tragically lost her nine-year-old daughter Joanna Sophia to SUDEP in 2018.

Dr. Olivia Hoffman, post-doctoral researcher in Dr. Avtar Roopra’s lab at the University of Wisconsin-Madison, discusses one of the most exciting discoveries in epilepsy research in recent years, a repurposed drug that has shown remarkable promise in eliminating seizures and restoring cognition in mice.

Longtime CURE Epilepsy Champion and current board member Shalee Cunneen comes back to the podcast to share her family’s journey with epilepsy and fundraising efforts for a new CURE Epilepsy research initiative.

Dr. Dan Lowenstein discusses the current efforts to push Congress to adopt a National Plan for Epilepsy, explaining who is behind it, what it is, and what it could mean to the epilepsy community.

Mike Simmel shares his epilepsy journey, explains how his passion for basketball helped him navigate the impacts of epilepsy, and recounts how a personal experience with epilepsy stigma inspired him to help kids with epilepsy and other challenges.

Dr. Connie Tomaino, music therapist and co-founder of the Institute for Music and Neurologic Function, discusses how music therapy is used to treat neurologic conditions and explains what we know about the power of music to heal the brain.

This month on Seizing Life® Dr. Kelly Tyson shares her decade-long journey to an epilepsy diagnosis. Despite numerous visits to various medical experts through the years and majoring in neuroscience in college, Kelly was never referred to a neurologist, nor did she recognize the “episodes” she experienced as seizures. Kelly details how she managed these episodes through college, graduate school, and medical school, and reveals the surprising way that she came to realize she was having seizures.

This month Seizing Life® goes on location at the Joey’s Song Freezing Man Festival to speak with Kay Hanley and John Cowsill, two musicians with personal connections to epilepsy who participated in the multiday music festival to raise money for epilepsy research.

Patricia Dean, ARNP and the Epilepsy Network Specialist in the Comprehensive Epilepsy Center at Nicklaus Children’s Hospital in Miami, discusses managing the relationship with your child’s epilepsy care team.

Dr. Madeleine Oudin shares her daughter’s epilepsy journey following a devastating genetic diagnosis and the onset of infantile spasms, and explains how it has impacted her work as a researcher in pursuing a new potential therapy around the SCN8A gene.

Joey’s Song founder Mike Gomoll shares his son’s epilepsy story and discusses the creation, growth, and evolution of Joey’s Song into the multi-artist, multi-day, “Freezing Man Festival.”

In observance of Sudden Unexpected Death in Epilepsy (SUDEP) Action Day on October 16th, we speak with the Maffie family about the tragic loss of Anthony Maffie to SUDEP and their advocacy and fundraising efforts in Anthony’s honor.

This month we welcome Matthew Summerfield to the podcast. Matthew has lived with epilepsy since his first seizure at the age of eleven. Though he was advised early on not to tell anyone about his epilepsy, Matthew has refused to be held back by seizures, studying neurosceience as a college undergraduate, and now pursuing a PhD while working in an epilepsy research lab at the University of Iowa.

This month on Seizing Life® we speak with Dr. Elisa Zanier of the Mario Negri Institute in Milan, Italy about the current state of research into Post-Traumatic Epilepsy (PTE) in the wake of a recent International Conference on PTE co-hosted by CURE Epilepsy.

After losing her son to a rare form of epilepsy called NORSE, or New Onset Refractory Status Epilepticus, Nora Wong set out to get answers from doctors and researchers. When she found little information and more questions, she founded the NORSE Institute to raise awareness and fund research into this sudden and devastating form of epilepsy.

This month on Seizing Life® Jon Tuteur shares his journey with adult-onset epilepsy. From his first seizure at age thirty, through his epilepsy diagnosis, treatment, and eventual brain surgery, Jon discuses the physical and emotional impacts of seizures, medications, diagnostic tests, and medical procedures in pursuit of controlling his epilepsy. He also tells us about his forthcoming book Seizing Today: Discovering Purpose and Authenticity in a Life Changing Diagnosis

Dr. Laura O’Dwyer joins us to talk about the fastest growing segment of people living with epilepsy in the United States – older adults. Dr. O’Dwyer explains why adults are more likely to develop epilepsy later in life, outlines the challenges of recognizing, diagnosing, and treating epilepsy in older adults, and provides valuable information for older adults living with epilepsy and their caregivers.

This month on Seizing Life® author Laura Beretsky shares her decades-long journey with epilepsy, from diagnosis at age 6, through college, parenting, fighting discrimination in the workplace, and ultimately seizing control of her epilepsy via life-changing surgery.

This month on Seizing Life® a nurse and mother shares her young son’s journey from the onset of focal seizures to a devastating diagnosis of Rasmussen’s Encephalitis to a life-changing brain surgery.

This month on Seizing Life® we explore artificial intelligence as it relates to epilepsy care, how it’s impacting the process of diagnosing epilepsy and treatment today, and what it promises for the future.

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 that Nick pursued until his passing from a seizure earlier this year.

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 range of areas within epilepsy care, treatment, and patient information.

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.