Share Your Story

Addyson & Braxtin Share your storyAt the LGS Foundation, we want you to share your story!

We believe that when you share your story, you will help others to understand what living with LGS is like and the impact it has on your family.

We will select stories to feature on the LGS Foundation’s website and/or social media throughout the year.

After sharing your story with us using the form below, please email any pictures and/or video clips to info@lgsfoundation.org.

As you are considering what to include in your submission, some of these questions may help tell your story about living with LGS:

  • What has been challenging?
  • What has been helpful to you?
  • When did the seizures begin? What led to a diagnosis?
  • What were the early days like for the person with LGS and for the family?
  • What changes would you like to see in LGS care and research?
  • What is your hope for the future of your loved one? For the LGS community?
  • What advice do you have for newly diagnosed LGS families?


Updated 10/7/24 (SC)