Join the KCNQ2 Cure global community — upload a photo or story that showcases how you take action in the fight against epilepsy.


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

Our goal is to help others understand the impact of KCNQ2 developmental and epileptic encephalopathy 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 truth 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?

We also accept photo submissions. If you’d prefer to share a photo that captures a memorable moment, such as a positive doctor’s visit, vacation or outing, holidays with family, or any other unique experience, you can submit a photo with a short caption.

If you are interested in sharing your story or photo, please complete the form below.

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