We are Glad You Found Us.
Join the Family Network
We are so glad you found us! If your loved one has been diagnosed with a mutation of the KCNT1 gene, you are not alone. You are now part of a compassionate and determined community working toward a brighter future.
To learn more about how we support families and drive progress, we invite you to read our Community Charter: Hope Is on the Horizon. It reflects our shared values of kindness, collaboration, and action, and outlines the many ways you can get involved. Together, we’re making a difference.
- Parents and Caregivers: Complete the form below to join our Contact List and stay informed about educational events, studies, and clinical trials.
- Friends and Family: Sign up for our newsletter and updates with just a name and email address here.
Be sure to follow our Foundation Facebook page and connect with others in our private Facebook Support Groups, including the KCNT1 Gene Mutation Support Group and ADNFLE/ADSHE. To join, email us at FBSupport@kcnt1epilepsy.org.
We’re here to welcome you, support you, and work together to bring hope closer for everyone impacted by KCNT1 mutations.
Step 1 – Register
KCNT1 Family Contact List
Parent or Caregiver: If you are the parent or primary caregiver for a person with a KCNT1 gene variant, we encourage you to sign up for our Family Contact List. If you, yourself have a KCNT1 variant, we also invite you to fill this form out as well. This information will be used to keep you informed of research and clinical trial opportunities, to share educational resources, as well as to help families connect with each other. Your information will never be shared with third parties of any kind and will be only be used for communication purposes.
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Other Friends and Supporters
Other community members who are interested in learning more about KCNT1 disorders, supporting our community of families, and staying up to date on events and research can sign up for this separate mailing list (click here).
Step 2- If you live in the U.S., Enroll in our digital natural history study with Citizen Health
U.S. families can sign up for Invitae KCNT1 study here. You will need to take a photo of your ID, child’s birth certificate (you can order a replacement from here), genetic report or the name of the hospital or doctor who ordered it, a list of the main doctors and hospitals you use.
This is a very important study for the KCNT1 community. It will give researchers and drug developers information they need to better understand the disease, develop treatments and design clinical trials.
