Seizing Life

This month on Seizing Life, 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.

This month on Seizing Life® 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.

This month on Seizing Life® 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. The post Overcoming Seizures to Pursue a Neuroscience Degree and Help Others Living with Epilepsy appeared first on CURE Epilepsy.

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. The post Overcoming Seizures to Pursue a Neuroscience Degree and Help Others Living with Epilepsy appeared first on CURE Epilepsy.

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. The post Post-Traumatic Epilepsy: What We Know and Where the Research is Going appeared first on CURE Epilepsy.

Dr. Elisa Zanier of the Mario Negri Institute in Milan, Italy discusses the current state of research into Post-Traumatic Epilepsy (PTE). The post Post-Traumatic Epilepsy: What We Know and Where the Research is Going appeared first on 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. The post The NORSE Institute: A Mother's Loss Drives Awareness and Research into a Devastating Form of Epilepsy appeared first on CURE Epilepsy.

After losing her son to a sudden and devastating form of epilepsy, Nora Wong founded the NORSE Institute to raise awareness and fund research. The post The NORSE Institute: A Mother's Loss Drives Awareness and Research into a Devastating Form of Epilepsy appeared first on CURE 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 The post The Sudden and Life-Altering Impact of Adult-Onset Epilepsy appeared first on CURE Epilepsy.

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 The post The Sudden and Life-Altering Impact of Adult-Onset Epilepsy appeared first on CURE Epilepsy.

This week on Seizing Life® 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. The post Older Adults and Epilepsy: the Causes, the Signs, and the Treatments appeared first on CURE Epilepsy.

Dr. Laura O'Dwyer discusses the fastest growing segment of people living with epilepsy, adults over 65 years old. Dr. O'Dwyer provides an overview of the causes of epilepsy in older adults, the subtle signs to look for, and the importance The post Older Adults and Epilepsy: the Causes, the Signs, and the Treatments appeared first on CURE Epilepsy.

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. The post One Woman's Epilepsy Journey Through Childhood, Parenting, Discrimination, and Surgery appeared first on CURE Epilepsy.

This month on Seizing Life® author Laura Beretsky shares her decades-long journey with epilepsy chronicled in her recent memoir Seizing Control. The post One Woman's Epilepsy Journey Through Childhood, Parenting, Discrimination, and Surgery appeared first on CURE Epilepsy.

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. The post A Nurse's Knowledge & A Mother's Love Leads to Son's Life-Changing Brain Surgery appeared first on CURE Epilepsy.

A mother uses her nursing knowledge to advocate for her son's epilepsy care and surgery. The post A Nurse's Knowledge & A Mother's Love Leads to Son's Life-Changing Brain Surgery appeared first on CURE Epilepsy.

This month on Seizing Life® we explore artificial intelligence as it relates to epilepsy care, how it's impacting epilepsy diagnosis and treatment today, and what it promises for the future. The post Artificial Intelligence and Epilepsy: The Promise & Pitfalls of AI in Diagnosis and Treatment appeared first on CURE Epilepsy.

Dr. Daniel Goldenholz of Beth Israel Deaconess Medical Center discusses the current and potential impacts of artificial intelligence on epilepsy care. The post Artificial Intelligence and Epilepsy: The Promise & Pitfalls of AI in Diagnosis and Treatment appeared first on CURE Epilepsy.

This week on Seizing Life we revisit just a few of the incredible guests and conversations from 2020. In a challenging year, we, like so many across the country, had to adjust to working remotely. And although we had to sit in the kitchen alone, we were fortunate to be joined by many inspiring and insightful guests from across the country. The post The Best of Seizing Life 2020 appeared first on CURE Epilepsy.

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

This week on Seizing Life® we speak with two rare epilepsy organizations, The KCNT1 Epilepsy Foundation and The Cute Syndrome Foundation, about community, awareness, and advancing research. The post Rare Epilepsy Organizations: Fostering Community and Advancing Research appeared first on CURE Epilepsy.

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. The post Regenerative Brain Cell Therapy: One Woman's Journey to Seizure Freedom appeared first on CURE Epilepsy.

This week on Seizing Life® Annette Adkins discusses the impacts of intractable epilepsy on her life, and how it led her to a regenerative brain cell clinical trial that has brought her a year of seizure freedom. The post Regenerative Brain Cell Therapy: One Woman's Journey to Seizure Freedom appeared first on CURE Epilepsy.

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. The post Rare Epilepsy Organizations: Fostering Community and Advancing Research appeared first on CURE Epilepsy.

This week on Seizing Life® epilepsy researcher Dr. Chris Dulla provides information about infantile spasms, from detection and diagnosis to current research and future improvements in treatment. The post Infantile Spasms: The Facts, The Research, and The Hope for the Future appeared first on CURE Epilepsy.

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. The post Infantile Spasms: The Facts, The Research, and The Hope for the Future appeared first on CURE Epilepsy.

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. The post Epilepsy in Women: Challenges, Concerns, and Considerations appeared first on CURE Epilepsy.

This week on Seizing Life® Dr. Elizabeth Gerard discusses concerns specific to women living with epilepsy. From puberty to menstruation, contraception, pregnancy, and menopause, we explore managing epilepsy through all stages of a woman's life. The post Epilepsy in Women: Challenges, Concerns, and Considerations appeared first on CURE Epilepsy.

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. The post NYC Marathoner Achieves Seizure Control and Runs for Epilepsy Research appeared first on CURE Epilepsy.

This week on Seizing Life® Peter Burpee shares his experiences with absence and tonic clonic seizures and explains why he's running for Team CURE Epilepsy in the upcoming NYC Marathon. The post NYC Marathoner Achieves Seizure Control and Runs for Epilepsy Research appeared first on CURE Epilepsy.

This week on Seizing Life® Dr. Richard Goldstein, Associate Professor of Pediatrics at Harvard Medical School, discusses his research into both Sudden Unexpected Death in Pediatrics (SUDP) and the grieving process of bereaved parents. The post Searching for Answers, Providing Support, and Understanding Grief After the Death of a Child appeared first on CURE Epilepsy.

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. The post Searching for Answers, Providing Support, and Understanding Grief After the Death of a Child appeared first on CURE Epilepsy.

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. The post Infantile Spasms Diagnosis and Treatment Journey Inspires Children's Book appeared first on CURE Epilepsy.

This week on Seizing Life® Kate Kostolansky shares her daughter's infantile spasms diagnosis and treatment journey, and explains how these experiences inspired a children's book to help newly-diagnosed families. The post Infantile Spasms Diagnosis and Treatment Journey Inspires Children's Book appeared first on CURE Epilepsy.

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. The post An Extraordinary Life of Autism, Epilepsy, and Advocacy appeared first on CURE Epilepsy.

This week on Seizing Life® Barbara D'Amora tells us about her son Nicholas, who lived with autism and epilepsy and became an active and inspirational advocate for the autistic community despite being nonverbal. The post An Extraordinary Life of Autism, Epilepsy, and Advocacy appeared first on CURE Epilepsy.

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. The post A Young Woman's Journey with Jeavons Syndrome appeared first on CURE Epilepsy.

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. The post A Young Woman's Journey with Jeavons Syndrome appeared first on CURE 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. The post Pursuing Effective Epilepsy Treatment and Running for Research appeared first on CURE 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. The post Pursuing Effective Epilepsy Treatment and Running for Research appeared first on CURE Epilepsy.

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. The post From Hiding Diagnosis to Advocating for Awareness: A Young Woman's Epilepsy Journey appeared first on CURE Epilepsy.

This week on Seizing Life® Mariah Mayhugh recounts her epilepsy journey, from hiding her diagnosis to becoming a passionate advocate for epilepsy awareness. The post From Hiding Diagnosis to Advocating for Awareness: A Young Woman's Epilepsy Journey appeared first on CURE Epilepsy.

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. The post A Teen Uncovers the Emotional Impacts of Childhood Seizures appeared first on CURE Epilepsy.

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. The post A Teen Uncovers the Emotional Impacts of Childhood Seizures appeared first on CURE Epilepsy.

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. The post Comprehensive Epilepsy Centers: An Insider's Guide appeared first on CURE Epilepsy.