You are not alone
Newly Diagnosed
Welcome. Take a breath. We will walk with you.
Newly Diagnosed
We know a KCNQ2 diagnosis can be overwhelming.
You may be confused, scared, frustrated, or uncertain—and your emotions may change from day to day, sometimes even hour to hour.
As parents of children with KCNQ2, we know what that feels like. But we're here to tell you there is hope.
“I could never have known on that diagnosis day that what seemed like a lonely time would become a wonderful world of people who love our child just as much as we do.”
Free download
Navigating KCNQ2: A Guide for Parents and Caregivers
Start here. Our guide covers what to expect, who to involve in your child's care, and where to find support—ready to print, save, and share with your care team.
Download the guide (PDF)You are not alone.
You are now part of KCNQ2 Cure: a network of families, researchers, clinicians, and other professionals who are determined to make a difference.
A community that gets it
Our families and experts are here to help you navigate your journey—locally and around the world.
A rare, newer diagnosis
KCNQ2 was first identified in 2012. Your doctor may not be familiar with it, so you may need to take the lead in learning more.
Care for the whole child
Seizure treatment, plus geneticists, neurologists, GI, vision and hearing checks, and early physical, cognitive and speech therapy.
From families, for families
Recommendations from our families
A good starting point for learning about KCNQ2-related disorders and resources. Take it one step at a time—there's no rush to do it all at once.
Safety & medical
Learn & connect
Set up a new parent call
Talk with Scotty, a KCNQ2 mom
Co-Founder & Executive Director · Mom to Harper · Denver, CO
Book a free virtual meeting to ask questions and get pointed to the right resources.
Book a time with Scotty