KCNT1 Epilepsy Foundation News & Updates
Stay updated with the latest news on KCNT1 epilepsy, including genetic research, drug advancements, patient stories, advocacy efforts, and support for parents.
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Co-founder, Justin West participates in a panel of rare dads who are working to make a difference.
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Foundation Executive Director visits labs to learn about the KCNT1 cell models they are developing.
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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.
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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.
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Co-founder Samantha MacMechan interviewed on Good Day Chicago Fox 32 about KCNT1 diagnosis and fighting for a cure.
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Co-Founder, Justin West and his family are featured in a local magazine for Rare Disease Week.
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Dr. Justin West, an Orange County plastic surgeon, describes his 3-year-old son’s genetic seizure disorder and the search for treatment.
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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.
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Program incorporates patient-driven study to inform research and drug development for KCNT1-related epilepsy.
