Share Your Story

Addyson & BraxtinAt the LGS Foundation, we want to hear your stories!

We believe that your story will help others to understand what living with LGS is like and the effects it has on your family.

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

When sharing your story with us, please include the following:

  • Your first and last name
  • The name of your loved one with LGS
  • Photos and/or video clips
  • Tell us about yourself and your loved one with LGS

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?

Share Your Story

By sharing your story, you grant permission to the LGS Foundation to use your and your loved one’s photo(s) and/or video(s), which you submit to be used to raise awareness of LGS. You also acknowledge that LGS Foundation may choose not to use your photo(s) at this time but may do so later. The LGS Foundation will only use your story to raise awareness of LGS and will not share your story with any third party for their use. The LGS Foundation may slightly modify stories to make them fit the necessary length requirement, but we will always preserve the integrity of your story. Thank you for sharing your story with others. 

Updated August 18, 2022