Living with KCNA2
10 Epilepsy Resources For Families Living With Rare Epilepsies
Epilepsy resources can help families find reliable medical information, connect with other parents, prepare for seizures, locate specialists, follow research,
We’re Here With You
Welcome To The KCNA2 Epilepsy Global Connection
This isn’t the path you hope to walk, but you’ve found people who understand. KCNA2-related disorders are rare, complex, and still being studied and you’re not navigating it alone. We are a 501(c)(3) nonprofit dedicated to supporting families, advancing research, and creating a compassionate space where no one feels forgotten.
Our Mission & Vision
The mission of KCNA2 Epilepsy, Inc. is to empower our community through education and awareness while nurturing meaningful connections between KCNA2 families and research professionals who work to find effective treatments and a cure for this rare form of epilepsy.
Our Vision
The vision for KCNA2 Epilepsy, Inc. is for every individual diagnosed with KCNA2 to have a supportive community, along with their family, caregivers and treatment teams who can access ample resources and effective treatments for this rare epilepsy. Ultimately, the collaboration we create between KCNA2 families and researchers will hopefully result in discovering a cure.
What Is KCNA2?
KCNA2 is a gene that helps control how brain cells communicate. It affects the flow of potassium in and out of cells; something essential for everything from movement and speech to balance, coordination, and brain activity. When something goes wrong in this gene, the effects can be far-reaching. Symptoms can look like epilepsy, ataxia, spasticity, or developmental delays. But the way each child is affected is unique.
The science is still unfolding. Researchers around the world are working to better understand these variants and what can be done. In the meantime, families are learning, adapting, and advocating with every step.
Newly Diagnosed? Start Here
A KCNA2 diagnosis can feel overwhelming. We created this section to help you get the most out of our website, one step at a time. From understanding the basics of the KCNA2 gene to learning how to build your child’s care team, we’ve gathered the most important first steps in one place.
You’ll find guidance on how to navigate where information is on symptoms, related conditions, how to talk with caregivers, and connect with other families who truly understand. Whether you’re reading from your phone in a hospital waiting room or sitting with a diagnosis at your kitchen table, the Newly Diagnosed page is here to meet you where you are.
Take your time. Come back as often as you need. We’ll be here.
What We’re Doing - News & Updates
KCNA2 research is gaining momentum. Scientists, clinicians, and advocates are working together to understand how this gene works, what goes wrong, and how to fix it. From new ASO therapies to drug repurposing to mouse models and international registries, the effort is growing.
Your voice helps drive it. Families who join research efforts, share data, and raise awareness are part of the reason we’re seeing progress.
What We’re Doing - News & Updates
KCNA2 research is gaining momentum. Scientists, clinicians, and advocates are working together to understand how this gene works, what goes wrong, and how to fix it. From new ASO therapies to drug repurposing to mouse models and international registries, the effort is growing.
Your voice helps drive it. Families who join research efforts, share data, and raise awareness are part of the reason we’re seeing progress.
How You Can Help
KCNA2 Epilepsy Foundation is a registered 501(c)(3) nonprofit. We rely on the strength of families, friends, clinicians, and generous donors to keep this work going. Every dollar raised goes directly to supporting research, family resources, and community building.
Whether you’re hosting a fundraiser, making a gift, or simply sharing our message, you are moving hope forward.
- Make a Gift
- Fundraise With Us
- Volunteer Your Skills
- Wear & Share: KCNA2 Swag
Our Blogs
Read More »
Term
Advocating For Classroom Seizure Safety For Families With Rare Epilepsies
Seizure safety at school means making sure the people caring for your child know what their seizures look like, how
Term
What Are Generalized Seizures?
Generalized seizures are seizures that involve networks on both sides of the brain from the beginning of the seizure. They
Still searching for something?
Let’s keep going. We see you. We’re with you. And we’re not giving up.
KCNA2 Epilepsy Foundation | A 501(c)(3) nonprofit organization
