Families Refused to Wait
Based in the U.S. and serving the global KCNT1 community, we exist to accelerate research and shape the future of care.
What Makes KCNT1 Different
KCNT1-related epilepsy is ultra-rare, severe, and often begins in infancy. Yet until recently, almost no focused research or coordinated development efforts existed. KCNT1 mutations affect potassium ion channels—offering a direct target for precision medicine, but also creating complex challenges in drug development. Families affected by KCNT1 are often told that nothing can be done. Our foundation was created to prove otherwise.
Our Approach
Families are at the center of everything we do
We act with urgency, impact, and integrity
We make funding decisions transparently and strategically
We are committed to equity and global inclusion
Milestones
Foundation launched
First KCNT1 Scientific Conference held in Baltimore
Global Scientific Advisory Board established
Industry and research collaborations initiated
Therapeutic pipeline growth and executive leadership appointed
Trial design partnerships and natural history work underway
Selected by the Chan Zuckerberg Institute as Rare As One Partner
Clinical Advisory Board formed
Our Commitment to Transparency & Community Trust
At the KCNT1 Epilepsy Foundation, we believe in leading with integrity—because every family, donor, and partner deserves honesty, accountability, and a voice.
Guided by Families
The patient and caregiver perspective shapes everything we do—from deciding what research to fund, to designing programs that meet real-world needs. Your experiences are not just valued—they drive our mission.
Responsible Stewardship
We treat every donation with care:
- All research funding goes through a scientific review and mission screening process.
- We follow clear policies to ensure funds are used wisely and ethically.
- Donors have the right to know how their gifts are used—and we make sure they do.
Keeping It Clean and Clear
- All board and staff members complete Conflict of Interest disclosures every year.
- We do not promote or endorse specific treatments or companies—we help families access clear, unbiased information.
- We protect your data and privacy, while also supporting research that moves us all forward.
Community Input Always Welcome
Whether you’re a newly diagnosed parent or a longtime advocate, your voice matters. We welcome suggestions and feedback at any time—because this foundation is yours, too.
Our Founders
The Foundation was launched in 2019 by Seth Greenblott, father of two, including a daughter living with KCNT1-related epilepsy. After organizing the first KCNT1 Conference in Baltimore, which brought together scientists and families from around the world, Seth laid the foundation for a community-powered movement.
From there, Dr. Justin West—physician, father of three, and tireless advocate—helped fuel the foundation’s scientific impact. His son Andrew’s diagnosis at nine months turned advocacy into action. As President and Director of Clinical Medicine, Dr. West has helped establish key partnerships with industry and research teams worldwide.
Samantha MacMechan, a corporate executive and mother of Charlotte, who was diagnosed with MPEI at nine weeks old, brought passionate leadership and clarity of vision to the board. Refusing to accept the limits of the diagnosis, she helped forge a new path for research acceleration.
Sarah Drislane, our Executive Director and great-aunt to a KCNT1 warrior, combines clinical insight and strategic operations to support the foundation’s rapid growth. With a background in speech-language pathology, business, and marketing, she has helped build a sustainable structure that ensures long-term progress.
