Share Your Story

KCNQ2 Cutie Birthday Shoutout!

Sign up today for a Birthday Shoutout, which we will post on social media for your KCNQ2 child's birthday.

We love celebrating our KCNQ2 Warriors, especially on their BIG DAY! Please share any accomplishments or big events in the past year.

Please sign up 2-4 weeks before their birthday.

kcnq2 birthday


KCNQ2 Warrior Name(Required)
MM slash DD slash YYYY
(All pictures must be in a high resolution.)
Accepted file types: png, jpg, jpeg, gif, Max. file size: 50 MB.

Share A Loved Ones Journey

We welcome parents, caregivers, those who have lost a loved one, and healthcare professionals to share their stories with the KCNQ2 community. You can view our communities stories here.

Our goal is to help others understand the impact of KCNQ2 and engage with individuals who may be interested in joining our efforts. We hope to share as many stories as possible year-round through social media.

Need help getting started? Consider answering one of the following questions:

  • Share a moment of kindness that moved you during this journey. Perhaps someone showed compassion or kindness when you needed it most.
  • What is the one aspect you would like to tell others about your experience with KCNQ2?
  • How has your life changed since learning of this diagnosis?
  • Have there been any good changes in your life since learning of this diagnosis?
  • Is there something you or your loved one aren't able to do since learning of this diagnosis that makes living with KCNQ2 more challenging than people realize?
  • Moving forward, how do you plan to remain engaged with the KCNQ2 community?

A Place for Us!

KCNQ2 Cure Alliance's Vice President, Sara James Butcher, shares her families KCNQ2 encephalopathy journey.