Support / Educational Resources / Research
Our Mission
Driving Urgent Progress for the KCNT1 Community
We unite families, researchers, and global partners to accelerate treatments and empower lives impacted by KCNT1-related epilepsy.
OUR MISSION
At the KCNT1 Epilepsy Foundation, the heart of our mission is to accelerate treatments for KCNT1-related epilepsy and neurodevelopmental disorders through biomarker discovery, collaborative research, and family empowerment. Founded by caregivers, we are driven by urgency, scientific integrity, and the belief that progress begins with connection.
Why Our Mission Matters
KCNT1-related epilepsy is a rare and devastating neurological disorder. It can cause early-onset seizures, regression, and severely limits developmental milestones. Most families have few treatment options—and no time to wait.
We’re here to change that.
Families served globally
Invested in mission-driven research
Research Driven by the Patient Voice
At the core of our research strategy is the belief that patients and caregivers are not just participants—they are partners. Our research priorities are shaped by the lived experiences of families in our network. Parent-led insights guide our funding decisions, ensuring that every project we support is aligned with real-world needs and urgent family goals. We regularly consult our Family Network, involve caregivers in strategic discussions, and prioritize funding research that addresses quality of life, symptom relief, and clinical readiness.
Our Strategic Priorities
- Identify biomarkers & build data for trials
- Develop global care guidelines
- Expand family outreach & diagnostics
- Fund translational research
- Strengthen biotech & research collaborations
- Provide educational materials for those with KCNT1 gene variants
Stewardship with Integrity
“At KCNT1 Epilepsy Foundation, we don’t just fund ideas—we invest in real progress.”
- Independent Scientific Reviews
- Milestone-based funding
- Transparent reporting and accountability
Join Us in Creating Change
We believe that patients and families are essential partners in progress. Your voice, your experience, and your support help guide our research, advocacy, and education initiatives.
