In this episode of the KCNA2 & Rare Epilepsy Podcast, Monica Lopez Morales returns for a powerful and deeply honest conversation about the connection between epilepsy and mental health. Drawing from more than four decades of lived experience, Monica shares how epilepsy can affect far more than seizures alone, touching anxiety, depression, PTSD, stigma, isolation, and the daily emotional weight that many people carry silently.

Together, Monica and Nancy talk about what seizures are in simple terms, how epilepsy and mental health are deeply intertwined, and why emotional wellness should be part of epilepsy care from the very beginning. Monica also speaks candidly about support groups, self-advocacy, safe disclosure, movement, nutrition, and recognizing when help is needed.

This episode is especially valuable for adults living with epilepsy, parents raising children with epilepsy, family members, caregivers, and clinicians. It is also an important reminder that epilepsy affects the whole family, and that mental health symptoms may impact parents, siblings, and caregivers too. Monica encourages families to create safe spaces for children and teens to talk openly, and she reminds listeners that no one should have to carry this alone.

And remember...

About KCNA2

In this episode of the KCNA2 & Rare Epilepsy Podcast, Nancy sits down with Dr. Erika Gray, pharmacist and Chief Medical Officer of Toolbox Genomics, to break down the difference between genetics and genomics in a way families can actually understand. Together, they talk about how gene variants like KCNA2 can affect potassium channels, why gain-of-function and loss-of-function matter, how genomic testing may help guide treatment decisions, and what families should know about privacy, insurance, and next steps in testing. This is Part 1 of a two-part conversation focused on making a complex topic more clear, practical, and hopeful for families navigating rare epilepsy.

Whether you are a parent, caregiver, clinician, or researcher, this episode offers an accessible introduction to how genomics may support more personalized care for children with rare epilepsies and other neurological conditions.

Learn more:

KCNA2 Epilepsy Foundation: https://www.kcna2epilepsy.org/

In this episode of the KCNA2 & Rare Epilepsy Podcast, we welcome back epilepsy advocate Monica Lopez Morales for an honest and empowering conversation about what it really means to live with epilepsy. Monica shares her lived experience, the stigma and isolation many people face, and why epilepsy education matters so much for families, caregivers, clinicians, and the wider community.

Together, we talk about common myths around seizures, the different types of seizures people may not recognize, what seizure first aid actually looks like, and why awareness can save lives. Monica also opens up about SUDEP, the anxiety that can come with epilepsy, and the importance of community support for people who feel alone or misunderstood.

This episode is a reminder that epilepsy is about so much more than seizures. It is about safety, connection, mental health, dignity, and making sure no one has to navigate this journey alone.

And remember...

About KCNA2

KCNA2-related epilepsy is a rare neurological condition that affects how the brain sends electrical signals, often leading to seizures, movement challenges, and developmental differences. Every experience is unique, but community and shared stories play a critical role in support and understanding. You can read more on our website https://www.kcna2epilepsy.org/

What does a KCNA2 diagnosis actually mean, and how do researchers study rare epilepsies?

In this episode of the KCNA2 & Rare Epilepsy Podcast, Nancy speaks with Dr. Ulrike (Uli') Hedrich-Klimosch, a researcher in Germany focused on epilepsy, ion channels, neuronal networks, and KCNA2-related disease. Together, they break down complex ideas in a way families can understand, including what a channelopathy is, how gain-of-function and loss-of-function variants differ, why treatments like 4-aminopyridine (4-AP) may help some patients, and how research moves from the lab to the clinic.

This conversation is especially helpful for:

The episode also touches on the real-life impact of rare epilepsy on families, the promise and limits of current treatments, and why rare disease research matters so deeply.

Learn more about KCNA2 epilepsy, definitions, and family resources at the KCNA2 website:

You can also explore the KCNA2 glossary on the website for simple explanations of terms used in this episode.

This conversation goes beyond definitions and medical terms. It brings real clarity to what epilepsy looks like day to day, the stigma many people still face, and why awareness matters.

Together, Nancy and Monica explore:

Monica also shares practical insights for parents, caregivers, and individuals navigating epilepsy, including how to build confidence, advocate for support, and move forward with hope.

ABOUT KCNA2:

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#EpilepsyAwareness #KCNA2 #RareDisease #LivingWithEpilepsy #SeizureAwareness #EpilepsySupport #RareEpilepsy #DisabilityAwareness #CaregiverSupport #ChronicIllness

What does neurologically focused chiropractic care actually look like for children with KCNA2, epilepsy, developmental delay, motor challenges, and nervous system dysregulation?

In this episode of the KCNA2 & Rare Epilepsy Podcast, Nancy sits down with Dr. Nate DeJong of Highest Health Chiropractic Care to talk about how he evaluates the nervous system, what families may notice first when care begins, and why progress sometimes starts with the “soft signs” like sleep, digestion, and regulation.

Dr. DeJong explains how his practice approaches complex cases by looking at the central and autonomic nervous system, using case history, physical exam, and scan data to guide care. He also shares how his team thinks about stress, neuroplasticity, healing, and collaboration with OTs, PTs, and other providers.

This conversation will be especially meaningful for parents and caregivers who are looking for ways to better understand why a child may feel “stuck,” and what it can mean to build a stronger neurological foundation.

Highest Health Chiropractic Care: https://highesthealthchiropractic.com/

Important note:

If you’ve just received a KCNA2 diagnosis or you’re still searching for answers, this video is for you.

KCNA2-related disorders are rare, complex, and often overwhelming at first. You may be feeling scared, confused, or unsure of what comes next. But one thing we want you to know right away: you are not alone.

In this video, Alysha Applebaum, parent and board member on the KCNA@share2 Epilepsy foundation shares her experience and perspective of navigating a KCNA2 diagnosis. You will hear what this journey can look like, what challenges families often face, and how support and understanding can grow over time.

KCNA2 is a genetic condition that impacts how brain cells communicate, often leading to epilepsy, movement differences, and developmental delays. But every child is different. Every journey is unique.

Whether you’re newly diagnosed or further along in your journey, this space was created to help you feel more informed, more supported, and less alone.

What you’ll learn in this video:

This is just the beginning, but you do not have to navigate it by yourself.

Subscribe for more resources, family stories, and updates on KCNA2 research and support.

And visit our website to learn more: https://www.kcna2epilepsy.org/

#KCNA2 #RareDisease #EpilepsyAwareness #SpecialNeedsParenting #GeneticDisorders #YouAreNotAlone

In this episode of the KCNA2 and Other Rare Epilepsies Podcast, Nancy speaks with McKayla Leber, a KCNA2 mom, board member, and Air Force spouse. McKayla shares her family’s journey raising her son Aaron, now 11, while navigating frequent military moves and repeatedly rebuilding specialty care from the ground up.

Aaron’s seizures began at just 7 weeks old. McKayla describes the early emergency visits, stretches of normal testing, and the uncertainty that followed before genetic testing finally identified a de novo KCNA2 variant when Aaron was 2. At the time, he was one of only a handful of known cases worldwide.

The conversation also explores a pivotal moment during a military deployment, when Aaron developed a second seizure type while McKayla was home alone with young children. She explains what absence seizures looked like in real life and how frightening it was to recognize something new without immediate support.

McKayla offers practical insight for families who are:

Managing multiple seizure types

Restarting care teams after relocation

Learning to advocate clearly and efficiently in short medical appointments

Navigating developmental, communication, and learning challenges beyond seizures

Seeking more targeted research for potassium-channel disorders like KCNA2

She shares her structured approach to advocacy, including preparing one-page summaries for appointments, staying organized, and building connections across neurologists, therapists, schools, and specialists.

The episode closes with reflections on what life looks like for Aaron today, why KCNA2 is more than epilepsy alone, and what continues to give McKayla hope.

Medical note: This video is for education and support and is not medical advice. Always consult your clinician for medical decisions.

Follow us on our website: https://www.kcna2epilepsy.org/

#KCNA2 #RareEpilepsy #MilitaryFamily #EpilepsyAwareness #GeneticEpilepsy #AbsenceSeizures #CaregiverSupport #PatientAdvocacy

In this episode, Nancy speaks with leaders from the Rare Epilepsy Network (REN) about what it truly takes to move rare epilepsy research forward.

She is joined by Eileen Miller, Director of REN and longtime parent advocate, and Karen Utley, Chair of REN’s Coordinating Committee and President and Co-Founder of the International Foundation for CDKL5 Research. Karen’s daughter, Samantha, who lives with CDKL5 deficiency disorder, is also part of the conversation, offering a real-life reminder of the daily medical complexity families manage.

Together, they explain how REN began as a collaborative registry effort and grew into a network of more than 170 rare epilepsy organizations. They discuss how REN supports families who receive a diagnosis with no existing support group, how organizations share research knowledge and best practices, and why registries and natural history studies are critical to accelerating both care and cure.

The episode also addresses a difficult but honest question: why does research feel so slow? Karen and Eileen speak candidly about the realities of scientific timelines, the transition from animal studies to human trials, and the complex risk decisions families are often asked to consider. They also highlight the growing role of precision medicine and the importance of pursuing a specific genetic diagnosis whenever possible.

The conversation closes with practical advice for newly diagnosed families and a reminder that rare does not mean small, and no one has to face this journey alone.

Topics covered include:

The origin and mission of the Rare Epilepsy Network

Connecting families when no diagnosis-specific group exists

Research collaboration across rare epilepsies

The role of registries and natural history studies

Global research trends and multidisciplinary care

Precision medicine in epilepsy

Advocacy, hope, and navigating uncertainty

Follow REN on their website: https://www.rareepilepsynetwork.org/

Follow KCNA2 on our website: https://www.kcna2epilepsy.org/

Medical note: This video is for education and support and is not medical advice. 

Subscribe for more conversations focused on KCNA2 and other rare epilepsies, featuring families, clinicians, and researchers working to improve outcomes and expand access to care.

In this episode, Barbara Wolf shares her family’s journey with KCNA2-related epilepsy as the mother of Ella, now an adult living with the condition.

Barbara reflects on the earliest signs that something was not typical, including subtle blinking episodes that were later recognized as possible seizures, developmental shifts, and persistent crying that raised early concerns. She describes years of medical appointments focused primarily on seizure control, including experiences with the ketogenic diet, before genetic testing finally provided clarity. Because KCNA2 was not included on earlier testing panels, Ella’s diagnosis did not come until she was 21.

Barbara discusses what that diagnosis conversation looked like at the time, what was known about KCNA2 then, and how treatment decisions were made, including the use of 4-aminopyridine (4-AP) for gain-of-function KCNA2 and the careful monitoring required.

The episode also explores daily life today. Barbara speaks openly about managing ataxia and balance changes, the transition to using a walker, and how to support independence while maintaining safety. Most importantly, she shares who Ella is beyond the diagnosis: her personality, her presence, and the way she connects with others. As Barbara says, Ella is not defined by KCNA2.

This conversation offers perspective for families navigating delayed diagnoses, evolving symptoms, and the transition into adulthood with a rare genetic epilepsy.

Medical note: This video is for education and support and is not medical advice.

Follow us online at https://www.kcna2epilepsy.org/