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Hosted by kcna2epilepsy · 🇺🇸 US · EN · 20 episodes
Established thought leaders with verified media credentials.
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 with this disease. Our mission is to raise awareness, build connections and foster hope. This isn’t a science podcast (though you’ll learn a lot), our focus is on belonging and education. Together, we can move towards better treatments, clinical trials and ultimately, a cure.
kcna2epilepsy hosts The KCNA2 & Rare Epilepsy’s Podcast, a health show with 20 episodes published.
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 epilepsy, and how that experience transformed her life both at
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 testing in rare epilepsy. This episode explores the real ques
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 Loree Lipstein, CEO and Founder of Thread Strategies, about pract
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 KCNA2 until age 19. Janice shares her family’s journey through
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 KCNA2 diagnosis and the long, difficult road to getting answers
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 rare epilepsy. Jeffrey shares how his daughter’s seizures began
In this episode of the KCNA2 & Rare Epilepsy Podcast, Dr. Nancy Msara speaks with licensed genetic counselor Gillian Prinzing from Boston Children’s Hospital about genetic testing in epilepsy. They talk through what gene
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 Officer of Toolbox Genomics, to explore how pharmacogenomics a
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 decade
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 fam
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 l
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
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
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 Epilep
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
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 n
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 advoca
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,
In this episode of the KCNA2 and Other Rare Epilepsies Podcast, Nancy speaks with Oriana Hornick, a longtime KCNA2 community member, KCNA2 Epilepsy Foundation board member, and research coordinator. Oriana is also the mo
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 Robottom, a mother-daughter team with decades of combined exper
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The KCNA2 & Rare Epilepsy’s Podcast is hosted by kcna2epilepsy. The show is categorised under health (fitness) and has published 20 episodes.
The KCNA2 & Rare Epilepsy’s Podcast has published 20 episodes.
The KCNA2 & Rare Epilepsy’s Podcast regularly covers health, fitness, medicine. It sits in the health category, with a fitness focus.
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Episodes of The KCNA2 & Rare Epilepsy’s Podcast average 36 minutes. a focused format where a clear narrative arc and tight preparation matter most.
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