Learn about the KCNT1 Epilepsy Foundation, our mission, leadership team, and the work we do to support families and advance research in KCNT1-related epilepsy.
OUR MISSION
We are dedicated to accelerating the discovery of a disease-modifying treatment for our KCNT1 Epilepsy warriors! The Foundation is working to identify and connect families affected by KCNT1-related epilepsies, provide patient perspectives to physicians, researchers, and pharmaceutical industry professionals from all over the world and support preclinical and clinical efforts to develop a cure. These scientists are doing amazing work: hope is truly on the horizon!

Leadership

Justin West, M.D.
Co-Founder, President, Director of Clinical Medicine
Justin West is a physician and father of three. His youngest son Andrew was diagnosed with KCNT1 related epilepsy at 9 months of age. He is a co-founder and the President and Director of Clinical Medicine of the Foundation. He works with researchers and industry to identify and evaluate potential therapeutics.
Read more about Justin’s family.

Sarah Drislane Executive Director
Sarah is the great-aunt of a KCNT1 warrior and is dedicated to finding treatments for her nephew and all the other warriors. She is a former speech-language pathologist with experience in business and marketing. She is focused on helping the Foundation to achieve its mission of accelerating research and supporting the KCNT1 community. Contact her to learn more about the Foundation programs, to volunteer, or with any questions.

Ali Rosenberg, PhD
Scientific Outreach Officer
Ali is a scientific communication expert and cellular with a strong background in microbiology, genetics, regenerative biology, and neuroscience. Her diverse professional experience, including business development, scientific consulting, and successful grant writing bring expertise to help move the mission forward.
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.
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.

Norman Metcalfe
Jason Kaufman
Margot Goodkin, MD PhD
Bonnie Royster
Owen Billman
Joe Ricculli
Transparency
Forms and Policies
We understand the importance of transparency in our organization and the research that we fund. We pride ourselves on being efficient with donations and keeping our operating expenses to a minimum to ensure each gift brings us closer to a cure.
