Shows / The KCNA2 & Rare Epilepsy’s Podcast
The KCNA2 & Rare Epilepsy’s Podcast
Welcome to KCNA2 & Rare Epilepsy Podcast, a podcast created for the people living this journey and the people working to understand it.
Each episode, hosted by Dr. Nancy Musarra, invites listeners into honest, generous, and sometimes vulnerable conversations with parents, researchers, clinicians, and board members to discuss the daily experiences of living with KCNA2, seizures, and other rare forms of epilepsy. You’ll hear stories, questions, and hopes from people who understand and are living…
Episodes
- The KCNA2 & Rare Epilepsy’s Podcast
When Doctors Have Few Answers... Abeer Alshroof's KCNA2 Journey To Help Her Son
What happens when your child receives a diagnosis so rare that even the doctors have few answers? For one mother in Jordan, that was just the beginning of a…
- The KCNA2 & Rare Epilepsy’s Podcast
Understanding SUDEP: What Every Family Living With Epilepsy Deserves to Know with Dr. Nancy Musarra
What if one of the most serious risks of epilepsy was something you had never been warned about... even if you worked in medicine? Dr. Naum Shaparin and Joanne…
- The KCNA2 & Rare Epilepsy’s Podcast
Nighttime Wandering & Seizures: Safer Sleep at Home & On the Go |Jamie Overman & Dr. Nancy Musarra
For families caring for a child or loved one with epilepsy, autism, or complex medical needs, nighttime can bring a whole new set of worries. What happens if…
- The KCNA2 & Rare Epilepsy’s Podcast
A Diagnosis They Share: A Mother & Daughter’s KCNA2 Journey with Dr. Nancy Musarra & Sarah Tompkins
What is it like to discover that the rare epilepsy affecting your child is also part of your own story? In this episode of The KCNA2 & Rare Epilepsy Podcast…
- The KCNA2 & Rare Epilepsy’s Podcast
Epilepsy & Life Transitions - Setting Your Adult Kids Up For Success with Janice Hrabak
How do you prepare a child with KCNA2 or rare epilepsy for school changes, medical transitions, friendships, adulthood, and greater independence? In this…
- The KCNA2 & Rare Epilepsy’s Podcast
From Seizures to Running a Marathon: Living With Juvenile Myoclonic Epilepsy (JME) | KCNA2 Podcast
What is it like to be diagnosed with Juvenile Myoclonic Epilepsy (JME) as a teenager and then learn to advocate for yourself, explore new treatment options…
- The KCNA2 & Rare Epilepsy’s Podcast
Could a Patient Registry Bring KCNA2 Treatments Closer? Insights from Dr. Jan Henji Driedger
What can a patient registry really do for a rare disease community... and why does every family’s participation matter? In this episode of The KCNA2 & Rare…
- The KCNA2 & Rare Epilepsy’s Podcast
From Panic to Purpose: How One Mom Became a Rare Disease Advocate with Karen Morici
What happens when your child receives a diagnosis so rare that even the doctors caring for them have little experience with it? In this episode of The KCNA2 &…
- The KCNA2 & Rare Epilepsy’s Podcast
Art, Autism & Epilepsy | Joe Baker's Story on the KCNA2 & Rare Epilepsy Podcast
In this episode of The KCNA2 & Rare Epilepsy Podcast, Dr. Nancy Musarra sits down with Joe Baker, a 25-year-old artist living with autism and epilepsy, along…
- The KCNA2 & Rare Epilepsy’s Podcast
KCNA2 2026 Research Update: New Treatments, Registries & Hope with Oriana Horneck & Dr Nancy Musarra
In this episode of The KCNA2 & Rare Epilepsy Podcast, Dr. Nancy Musarra sits down with Oriana Horneck to share an update on the rapidly growing world of KCNA2…
- The KCNA2 & Rare Epilepsy’s Podcast
Rare Epilepsy Research, Precision Medicine & the Future of Genetic Therapies
What does rare epilepsy research actually look like—and how could today’s discoveries lead to more precise treatments tomorrow? In this episode of The KCNA2 &…
- The KCNA2 & Rare Epilepsy’s Podcast
He’s an Overcomer: Life With Mixed-Function KCNA2 with Dr. Nancy Musarra and Dawn Walters
In Part 2 of Dawn Walters’ story, host Dr. Nancy Musarra speaks with Dawn about her son Matthew’s teenage years and the progression of his KCNA2-related…
- The KCNA2 & Rare Epilepsy’s Podcast
Drop Seizures, Genetic Testing & an Unstoppable Child with Dawn Walters and Dr. Nancy Musarra
In this heartfelt conversation, host Dr. Nancy Musarra speaks with Dawn Walters about raising her son, Matthew, who lives with KCNA2-related epilepsy. Dawn…
- The KCNA2 & Rare Epilepsy’s Podcast
A Mother’s Journey Raising a Son with Autism and Epilepsy with Colleen Baker and Dr. Nancy Musarra
n this episode of The KCNA2 & Rare Epilepsy Podcast, host Dr. Nancy Musarra speaks with educator and parent Colleen Baker about raising a son with autism and…
- The KCNA2 & Rare Epilepsy’s Podcast
Genetic Testing for Epilepsy: What Happens After the Results? With Gillian Prinzing & Nancy Musarra
In part two of our conversation with genetic counselor Gillian Prinzing from Boston Children’s Hospital, we take a deeper look at the pros and cons of genetic…
- The KCNA2 & Rare Epilepsy’s Podcast
Why Some Nonprofits Grow While Others Burn Out With Loree Lipstein & Dr. Nancy Musarra
What does it really take to grow a small nonprofit without burning out? In this episode of the KCNA2 & Rare Epilepsy Podcast, Dr. Nancy Musarra talks with…
- The KCNA2 & Rare Epilepsy’s Podcast
Janice Hrabak Shares Her Family’s KCNA2 Journey with Dr. Nancy Musarra
In this episode of the KCNA2 & Rare Epilepsy Podcast, Dr. Nancy Musarra speaks with Janice Hrabak, a mother whose daughter was not genetically diagnosed with…
- The KCNA2 & Rare Epilepsy’s Podcast
Her Fight Is My Fight: Sarah Tompkins on KCNA2 Epilepsy, Seizures & Motherhood
In this episode of the KCNA2 & Rare Epilepsy Podcast, Dr. Nancy Musarra speaks with Sarah Tompkins, a mother from Alberta, Canada, about her daughter Arya’s…
- The KCNA2 & Rare Epilepsy’s Podcast
Living With KCNA2 Epilepsy: One Father’s Story of Seizures, Strength & Hope with Jeffrey Gomez
In this episode of the KCNA2 & Rare Epilepsy Podcast, Dr. Nancy Musarra sits down with Jeffrey Gomez to talk about his daughter’s journey with KCNA2-related…
- The KCNA2 & Rare Epilepsy’s Podcast
Genetic Testing in Rare Epilepsy: What Families Need to Know with Gillian Prinzing & Nancy Musarra
In this episode of the KCNA2 & Rare Epilepsy Podcast, Dr. Nancy Msara speaks with licensed genetic counselor Gillian Prinzing from Boston Children’s Hospital…
- The KCNA2 & Rare Epilepsy’s Podcast
How Genomics Can Inform Medication Decisions in Rare Epilepsies with Drs. Gray & Musarra - Part 2
In Part 2 of this series of the KCNA2 & Rare Epilepsy Podcast, Dr. Nancy Musarra continues her conversation with Dr. Erika Gray, pharmacist and Chief Medical…
- The KCNA2 & Rare Epilepsy’s Podcast
Epilepsy & Mental Health Are More Connected Than People Realize with Monica Lopez Morales
In this episode of the KCNA2 & Rare Epilepsy Podcast, Monica Lopez Morales returns for a powerful and deeply honest conversation about the connection between…
- The KCNA2 & Rare Epilepsy’s Podcast
Rare Epilepsy and Genomic Testing Explained with Dr. Erika Gray and Dr. Nancy Musarra
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…
- The KCNA2 & Rare Epilepsy’s Podcast
Epilepsy Is More Than Seizures with Monica Lopez Morales and Dr. Nancy Musarra
In this episode of the KCNA2 & Rare Epilepsy Podcast, we welcome back epilepsy advocate Monica Lopez Morales for an honest and empowering conversation about…
- The KCNA2 & Rare Epilepsy’s Podcast
Understanding KCNA2 Epilepsy with Researcher Dr. Ulrike (Uli') Hedrich-Klimosch & Dr. Nancy Musarra
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…
- The KCNA2 & Rare Epilepsy’s Podcast
What Does a Seizure Feel Like? Real Stories from Monica Lopez Morales and Dr. Nancy Musarra
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…
- The KCNA2 & Rare Epilepsy’s Podcast
What KCNA2 Parents Should Know About Neurologically Focused Chiropractic Care with Dr. Nate DeJong
What does neurologically focused chiropractic care actually look like for children with KCNA2, epilepsy, developmental delay, motor challenges, and nervous…
- The KCNA2 & Rare Epilepsy’s Podcast
One Family's Journey After Receiving A New KCNA2 Diagnosis with Alysha Applebaum and Nancy Musarra
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…
- The KCNA2 & Rare Epilepsy’s Podcast
“It’s More Than Just a Seizure” Living With KCNA2 Epilepsy Day to Day
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…
- The KCNA2 & Rare Epilepsy’s Podcast
From Diagnosis to Advocacy: Inside the Rare Epilepsy Network (REN)
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…
- The KCNA2 & Rare Epilepsy’s Podcast
A Mother’s 23-Year Journey with KCNA2 Epilepsy
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…
- The KCNA2 & Rare Epilepsy’s Podcast
From the NICU to a KCNA2 Diagnosis: A Parent’s Early Warning Signs
In this episode of the KCNA2 and Other Rare Epilepsies Podcast, Nancy speaks with Oriana Hornick, a longtime KCNA2 community member, KCNA2 Epilepsy Foundation…
- The KCNA2 & Rare Epilepsy’s Podcast
What Happens in the ER After a Seizure? Emergency Doctors Share Their Insights With Dr Nancy Musarra
In this episode of the KCNA2 and Other Rare Epilepsies Podcast, Nancy Musarra is joined by two emergency room physicians, Dr. Katie Robottom and Dr. Rosetta…
- The KCNA2 & Rare Epilepsy’s Podcast
The KCNA2 and Rare Epilepsy Podcast Trailer
The KCNA2 and Rare Epilepsy Podcast If your child has seizures and a KCNA2 diagnosis, life can feel confusing, isolated and scary. The KCNA2 and Rare Epilepsy…