Apr 9, 2026

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 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:
• What KCNA2 is and how it affects the brain
• Common symptoms and co-occurring conditions
• What building a care team can look like
• How other families are navigating this path

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

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