Your Support Matters!
Our mission is to accelerate research to find a cure for KCNT1-related epilepsy.
You Can Make A Difference - Donate by Dec 31st
You Can Make A Difference - Donate by Dec 31st
Sending Birthday Wishes for those with KCNT1 Disorders
Sending Birthday Wishes for those with KCNT1 Disorders
Make a birthday donation to the KCNT1 Epilepsy Foundation
Be Counted! KCNT1 Inaugural Census Count!
Be Counted! KCNT1 Inaugural Census Count!
Citizen.Health
Citizen.Health
'This is real': Newport Beach family seeks to ensure rare disease funding continues
'This is real': Newport Beach family seeks to ensure rare disease funding continues
Dr. Justin West started the nonprofit KCNT1 Epilepsy Foundation to help find treatments and cures for kids like his 7-year-old son, Andrew.
Bilingual Volunteers Needed for KCNT1
Bilingual Volunteers Needed for KCNT1
SAMi | The Nighttime Sleep Activity Movement Monitor
SAMi | The Nighttime Sleep Activity Movement Monitor
Experience peace of mind with SAMi, the no-wearable sleep monitor providing real-time alerts & recordings for those with movement disorders
Sign-up!
Subscribe to our Newsletter
Subscribe to our Newsletter
Doctor Registration Home — KCNT1 Epilepsy Foundation
Doctor Registration Home — KCNT1 Epilepsy Foundation
Join our Professional Network - For researchers and clinicians
Join our Professional Network - For researchers and clinicians
Connect and collaborate with other scientists, clinicians, and stakeholders to further our understanding of KCNT1 related disorders and accelerate the development of treatments and cures. Subscribe to receive updates, special announcements, grant notifications, and invitations to attend Research Roundtables and other opportunities to meet, share, and learn. If you are a clinician, we also invite you to add your contact info to our special directory: https://kcnt1epilepsy.org/doctor-registration
KCNT1 Birthday Announcement Sign-up Form
KCNT1 Birthday Announcement Sign-up Form
Access Google Forms with a personal Google account or Google Workspace account (for business use).
In the News
Meet Alexandria Wild, @Georgia Power 's Environmental Affairs team and mother to Emmy
Meet Alexandria Wild, @Georgia Power 's Environmental Affairs team and mother to Emmy
Meet Alexandria Wild, permitting engineer for Georgia Power 's Environmental Affairs team and mother to Emmy. Emmy was diagnosed with a mutation of the KCNT1 gene, a rare disease that causes...
KABC KCNT1 Epilepsy 5-25-23.mp4
KABC KCNT1 Epilepsy 5-25-23.mp4
Local Boy’s Journey With Rare Epilepsy Offers Hope to Others
Local Boy’s Journey With Rare Epilepsy Offers Hope to Others
TOMS RIVER – Silverton residents Kristy and Jeremy Salkewicz were on top of the world when they brought their firstborn home from the hospital eight years ago. The couple instantly fell in love with James and were overjoyed and relieved to see he appeared to be a big healthy baby. Despite their growing […]
ONCE UPON A GENE - EPISODE 182 - Doctor and Rare Disease Dad Is On A Mission to Accelerate Research — Once Upon A Gene
ONCE UPON A GENE - EPISODE 182 - Doctor and Rare Disease Dad Is On A Mission to Accelerate Research — Once Upon A Gene
Dadvocate Dr. Justin West is the father to Andrew, who has a devastating disease called KCNT1, a rare infant-onset seizure disorder. Justin serves as President and Co-Founder of the KCNT1 Epilepsy Foundation.
New hope for boy with rare epilepsy who has up to 50 seizures a day | ITV News
New hope for boy with rare epilepsy who has up to 50 seizures a day | ITV News
Three-year-old Paddy from Forest Hall has KCNT1-related epilepsy. The neurological condition is very rare. Around 12 children in the UK known to have it. | ITV News Tyne Tees
Fundraisers for KCNT1
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Contact Us and Join Our Mailing List
Contact Us and Join Our Mailing List
Enter your info to be contacted by one of the founders of the KCNT1 Epilepsy Foundation. This will subscribe you to our mailing list. You can unsubscribe any time.
For KCNT1 parents
Parents: Register to receive our updates
Parents: Register to receive our updates
KCNT1 related epilepsy new patient contact list
Information for families
Information for families
kcnt1 presentations and videos
Videos on Vimeo
Videos on Vimeo
https://linktr.ee/kcnt1
Participate in KCNT1 research
Digital Natural History Study with Invitae & Ciitizen
Digital Natural History Study with Invitae & Ciitizen
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