Today, the KCNT1 Epilepsy Foundation is proud to announce that we have launched a Digital Natural History Study (NHS) in partnership with Invitae. Our goal in establishing this leading-edge program utilizing Invitae’s Ciitizen technology is to accelerate the analysis of patient data for rare disease drug development -- and, in particular, to find treatments and cures for KCNT1. Click to read the press release.

Co-founder Justin West was interviewed for Rare disease week, where he shares his story and determination to find treatments for all the children with KCNT1 related illnesses.

Co-founder Samantha MacMechan interviewed on Good Day Chicago Fox 32 about KCNT1 diagnosis and fighting for a cure .

Co-Founder, Justin West and his family are featured in a local magazine for Rare Disease Week.

Dr. Justin West, an Orange County plastic surgeon, describes his 3-year-old son’s genetic seizure disorder and the search for treatment.

In this episode we hear from Samantha MacMechan, Co-Founder of the KCNT1 Epilepsy Foundation, sharing on their nonprofit’s awesome mission to find a disease-modifying treatment for their incredible kiddo warriors.

Program incorporates patient-driven study to inform research and drug development for KCNT1-related epilepsy