The KCNT1 Epilepsy Foundation began as a parent-led effort and has grown into a professional, mission-driven organization serving a global community.
From the first international conference to today’s research investments and partnerships, we are creating a roadmap to better care and real treatments.
Our Team
JUSTIN WEST, MD
Co-Founder
SARAH DRISLANE, MS
Executive Director
ALI ROSENBERG, PhD
Scientific Engagement Director
BRAD BRYAN, MBA, PhD
Data Strategist Lead
Megan Wright
Parent Support Program Coordinator
Amanda Abuhl, RN/BSN
Research Coordinator
Board of Directors
Our all-volunteer Board of Directors bring a wealth of experience from managing business operations, working with FDA and the drug development process, to running nonprofit foundations. We are grateful for the time our Board contribute towards our mission and goals.
If you are interested in volunteering in some capacity, please contact us! We want to hear from you and we encourage you to join our cause and spread the word in any way you can.
Owen Billman
Chairman
Justin West, MD
President, co-founder
Norman Metcalfe
Treasurer
Margot Goodkin, MD PhD
Secretary
Bonnie Royster
Director
Samantha MacMechan
Co-Founder
Jason Kaufman
Director
Dewey McLin, PhD
Director
Meg Snowden, JD
Sean Turbeville, PhD
Parent Support Specialists
Abigail
Andy
Ana
Angela
Chloe
Heather
Kristy
Justin
Meet Our Founders
In 2019, several families affected by this catastrophic diagnosis came together to form the foundation. Initiated by Seth Greenblott who hosted the first KCNT1 conference in Baltimore, the foundation has since grown to include other families and friends including Justin West and Samantha MacMechan.
Justin West, MD
More About Justin
Seth Greenblott
More about Seth
Samantha MacMechan
More About Samantha
Our partners in advocacy and research
As a small nonprofit, the KCNT1 Epilepsy Foundation relies on many partners in our journey to find new treatments, connect with new families,
and provide support to the KCNT1 community. We are grateful to the following organizations and communities for their support.
COMBINEDBrain
COMBINEDBrain is a nonprofit consortium devoted to speeding the path to clinical treatments for people with severe rare genetic non-verbal neurodevelopmental disorders by pooling efforts, studies, and data.
In addition to sharing resources and advocating for rare diseases, COMBINEDBrain also helps manage the KCNT1 Epilepsy Foundation biorepository so that researchers can compare rare genetic epilepsies.
CRID Number
The Clinical Research ID (CRID) is a service that enables people involved in clinical research to safely create their own unique universal ID.
We use CRID to connect various research efforts within our community and network of researchers, including the KCNT! Patient Research Registry.
DEE-P Connections
DEE-P Connections seeks to facilitate connections and share critical resources between the many families impacted by DEEs (developmental epileptic encephalopathies).
Together with many other rare epilepsy foundations, we partner with DEE-P Connections to organize webinars and share and distribute resources between communities.
Genetic Alliance
The KCNT1 Epilepsy foundation partners with Genetic Alliance and LunaPBC to operate the KCNT1 Patient Research Registry: a secure platform where KCNT1 families can take part in KCNT1 research by taking surveys and sharing other health information.
Genetic Alliance is a nonprofit that provides training and support to communities building patient registries and conducting research.
Global Genes
Global Genes is a 501(c)(3) non-profit organization dedicated to eliminating the burdens and challenges of rare diseases for patients and families globally. They fulfill this mission by helping patients find and build communities, gain access to information and resources, connect to researchers, clinicians, industry, government, and other stakeholders, share data and experiences, stand up, stand out, and become effective advocates on their own behalf.
Citizen
The KCNT1 Epilepsy Foundation is partnering with Citizen to conduct a digital natural history study.
Families living in the United States can use Citizen to gather all their child’s medical records and notes in one place, and then safely share those records with doctors for new consults, or with KCNT1 researchers to help improve our understanding of the disease.
Milken Institute – TRAIN Partner
We are now a participating organization of The Research Acceleration and Innovation Network (TRAIN) with FasterCures. We look forward to contributing to and learning from this unique program for patient-driven nonprofit foundations that fund medical research across a spectrum of diseases.
Orphan Disease Center
The Orphan Disease Center of the University of Pennsylvania Perelman School of Medicine operates the JumpStart Program, which connects patients and foundations to researchers and key opinion leaders, encouraging scientific collaboration. The KCNT1 Epilepsy Foundation is a participant in the JumpStart Program.
Rare Epilepsy Network
The KCNT1 Epilepsy Foundation is a proud member of the Rare Epilepsy Network (REN), together with many other rare epilepsy organizations and communities. REN works with urgency to collaboratively improve outcomes of rare epilepsy patients and families by fostering patient-focused research and advocacy.
Virginia Tech – Fralin Biomedical Research Institute
The lab, led by Matthew Weston, Ph.D., studies gene variants that cause human childhood epilepsies and seeks to understand how they alter neuronal physiology to cause network hyperexcitability and seizures.
The Connected Parent
A comprehensive, one-stop hub of resources local to you, and reviews for those hard-to-find services your family needs. With our easy-to-use filters, narrowing your search to find therapists, recreational activities, advocates, and other resources in your area has never been easier.
SAMi – The Sleep Activity Monitor
SAMi The Sleep Activity Monitor™ is a wearable-free system for parents, caregivers, and individuals that need to monitor closely for abnormal or potentially dangerous movements during sleep or rest.
CURE Epilepsy
CURE is a leading nongovernmental agency fully committed to funding research to find the cure for all epilepsies. We be pleased to be joint partners, co-funding past and a future research grant to accelerate progress on KCNT1 Epilepsy Foundation’s research priorities.
