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.
Joining is easy:
- 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.
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.
By providing a telephone number and submitting this form, you consent to receive SMS text messages from the KCNT1 Epilepsy Foundation about our services. Message frequency may vary. Message and data rates may apply. Reply STOP to opt out of further messaging and HELP for assistance or call (833)217-7728. Please see our Privacy Policy here.
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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).
