Share Your Story

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.

Share the Beauty of Your Loved One Who has KCNQ2

Our loved ones with KCNQ2 are beautiful, and we want to highlight their photos in our awareness materials and on our website! If you would like to submit a photo of your loved one to be considered for use in our materials, please complete the form below and upload a picture of your loved one.

We are looking for photos of people across the life span of KCNQ2. You can share a photo that captures a memorable moment, such as a positive doctor's visit, vacation or outing, holiday with family, or any other unique experience. Please note that we will not be able to use all the photos submitted.