Seizing Life

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.

In the finale of our 4-part series exploring the drug development process, we look at clinical trials through the eyes of a participant. We speak with Kim Nye, mother of two children with epilepsy and founder of the Tess Research Foundation, about her experiences enrolling her children in epilepsy clinical trials.

In the third part of our 4-part series exploring the drug development process, we explore the importance of clinical trial participation with Dr. Darcy Krueger, Director of the Tuberous Sclerosis Clinic and Associate Professor of Clinical Pediatrics and Neurology at Cincinnati Children’s Hospital Medical Center.

On this episode of Seizing Life, we talk with Dr. Kelly Knupp about the development process of a clinical trial from the IND application, through human clinical studies and the FDA approval process.

Today, in the first of a 4-part series exploring the drug development process and clinical trial participation, we speak with Dr. James Cloyd, the Lawrence C. Weaver Endowed Chair in Orphan Drug Development, and Director of the Center for Orphan Drug Research at the University of Minnesota College of Pharmacy.

Today on Seizing Life, we speak with Mike Coburn, Executive Vice President and Chief Operating Officer of Research! America, an organization that advocates for science, discovery and innovation to achieve better health for all. 

As Veterans Day nears, we speak with former U.S. Army Captain Patrick Horan and his wife Patty on this week’s episode of Seizing Life. The Horans describe the circumstances around Pat’s near-fatal injury, the amazing efforts of soldiers and medical personnel to save Pat’s life, the sudden, shocking onset of epilepsy months into Pat’s recovery process, and the long battle they have waged against PT...

On this episode of Seizing Life, Libby Boyce and Jessica Brandes, two mothers who each lost a son to SUDEP, discuss how they hope to transform tragedy and grief into action and change.

This week on Seizing Life, we present a never-before-seen episode with Kelly and Miguel Cervantes that was recorded in November 2018.  At the time of the recording, Kelly and Miguel were in the midst of provding care and desparately searching for answers for their 3-year-old daughter Adelaide who was suffering from an undiagnosed condition resulting in seizures and multiple physical and cognitive...

On this episode of Seizing Life, we’ve compiled insights from patients and doctors alike to explore and demystify brain surgery for epilepsy.

Main Street is an organization dedicated to building a holistic model of supportive and stable housing for people with disabilities. Founders Jillian and Scott Copeland‘s son Nicholas has epilepsy and lives with special needs. Today on Seizing Life, Jillian and Scott discuss the how their vision creates a community of belonging and how it may serve as a model for others to follow.

Today on Seizing Life, we’re taking a deep dive into seizures with Dr. Michael Smith, Senior Attending Neurologist and Director of the Rush Epilepsy Center in Chicago.

Alec Beauseigneur-Jimenez was injured in a training accident in May 2015, causing extensive damage to his hand and a concussion. The medical team’s focus was on the severe injury to his right hand, prompting multiple surgeries. However little attention was paid to the concussion.

Our guest this week is mother and advocate, Sherri Brady. Her daughter, Lauren was diagnosed with Rett Syndrome, a rare disorder that can have devastating impacts, including seizures. For the past 20 years, Sherri has gathered the tools she needs to advocate for Lauren’s care in a biased system.

As a child growing up with epilepsy, Christin Godale experienced stigma and exclusion by her peers, driving her to hide her condition from friends and classmates. But a neurologist’s encouragement sparked Christin’s interest in understanding her own epilepsy and eventually brought her to acceptance, advocacy, and the pursuit of her PhD in neuroscience with the ultimate the goal of becoming an epil...

Caroline Pratt was diagnosed with epilepsy at 8 years old.  Now 17, Caroline has battled seizures and the physical and emotional impacts. But with Caroline now attending college and living away from home for the first time, both parent and child have had to make concessions and changes within their relationship.

In this episode of Seizing Life, explore the psychological impacts of epilepsy that can result in mood disorders, like depression and anxiety with Dr. Kanner, Director of the International Comprehensive Epilepsy Center and Chief of Epilepsy Division at the University of Miami, Miller School of Medicine.

While this app comes from humble beginnings, Seizure Tracker now provides patients, families, and physicians the ability to track, understand, and treat seizures, as well as tools to manage treatment regimens and document medication side effects.

One in 26 Americans will develop epilepsy in their lifetimes and millions more will be touched by this devastating condition. While the diagnosis can be challenging there are people and groups who can provide support in many different ways.  The trick is how to find them.

In these challenging times of the COVID-19 pandemic, we are all trying to adjust to a “new normal”.  But for individuals, caregivers, and families battling epilepsy, current shelter-in-place guidelines bring additional challenges and concerns.

On this episode of Seizing Life, Dr. Vicky Whittemore, Program Director for Epilepsy and Epileptogenesis at NINDS and CURE Scientific Advisory Council member, explains how NINDS sets priorities, funds research, and collaborates with non-profits to move science forward in pursuit of new treatments for epilepsy.

On this episode of Seizing Life, CURE Post-Traumatic Epilepsy Initiative Grantee Dr. Jeffrey Loeb from the University of Illinois at Chicago explains how EEG data is used in diagnosing, treating, and researching epilepsy.

On this episode of Seizing Life, CURE Taking Flight Grantee Dr. Gemma Carvill explains how genetic discoveries in the lab can lead to precision care in the doctor’s office.

On this episode Dr. Linda Laux, Medical Director of the epilepsy center at Lurie Children’s Hospital, provides information on two new emergency seizure medications and discusses how they can be utilized in creating a Seizure Action Plan for epilepsy patients, families, and caregivers.

On this episode, former CURE Board Chair and BAND Foundation trustee Gardiner Lapham speaks with current Board Chair Stacey Pigott about the global impact and complex challenges of epilepsy and tells us how the foundation is helping combat the epilepsy health crisis in the developing world.