Best National Patient Advocate Foundation Podcasts (2025)

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Epilepsy for Dummies: Your New Handbook for Better Understanding Epilepsy 30:10

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1d ago30:10

30:10

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.…

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A Mother and Neurologist Shares Her Son’s Amazing Journey From Traumatic Birth to Seizure Freedom 41:29

30d ago41:29

41:29

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.By CURE Epilepsy

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Turning the Tragedy of SUDEP into Hope: The Story of the Joanna Sophia Foundation

2M ago

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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.By CURE Epilepsy

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On the Brink of Breakthrough: How an Arthritis Med Could Stop Seizures 54:43

3M ago54:43

54:43

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.…

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A Family’s Journey with Panayiotopoulos Syndrome 35:43

4M ago35:43

35:43

This week on Seizing Life®, journalist, television executive, and mother Scarlette Whyte joins us to share her family’s experience with Panayiotopoulos Syndrome, a type of early childhood epilepsy with which two of her three children have been diagnosed.By CURE Epilepsy

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10 Years of Ella’s Race: Raising Awareness & Finding Hope in Fundraising for Epilepsy Research 38:13

5M ago38:13

38:13

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.By CURE Epilepsy

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Advocating for a National Plan for Epilepsy in Uncertain Times 45:51

6M ago45:51

45:51

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.By CURE Epilepsy

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Using Basketball to Fight Stigma and Empower Kids Living with Epilepsy 30:47

7M ago30:47

30:47

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.By CURE Epilepsy

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Music Therapy for Neurologic Conditions: Understanding How It Works 25:11

8M ago25:11

25:11

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.By CURE Epilepsy

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Despite Medical Training, A Young Doctor’s Epilepsy Goes Undiagnosed for a Decade 33:57

9M ago33:57

33:57

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 …

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Joey’s Song Musicians: Rocking for Epilepsy Research is Personal 47:38

10M ago47:38

47:38

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.By CURE Epilepsy

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Fostering a Good Relationship with Your Child’s Epilepsy Care Team 32:06

11M ago32:06

32:06

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.By CURE Epilepsy

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SCN8A and Infantile Spasms: A Mother & Researcher Pursues a New Potential Therapy 40:40

1y ago40:40

40:40

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.By CURE Epilepsy

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Rocking for Research: The Inspiration and Impact of Joey’s Song 37:33

1y ago37:33

37:33

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.”By CURE Epilepsy

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One Family’s SUDEP story: A Tragic Loss Drives SUDEP Advocacy and Fundraising 31:02

1y ago31:02

31:02

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.By CURE Epilepsy

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Overcoming Seizures to Pursue a Neuroscience Degree and Help Others Living with Epilepsy 29:45

1+ y ago29:45

29:45

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 e…

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Post-Traumatic Epilepsy: What We Know and Where the Research is Going 28:31

1+ y ago28:31

28:31

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.By CURE Epilepsy