Share Your Story

Addyson & BraxtinAt the LGS Foundation, we want to hear your stories! In an effort to help spread awareness of LGS, 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. Email us to tell us how LGS has affected your life.

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 be helpful in telling your story of life 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

Note: We reserve the right to edit before publication.

By emailing the LGS Foundation your story and photo(s), you are agreeing to the following:

I hereby grant permission to the LGS Foundation and its agents or employees to use my child’s photo(s) and/or video(s) which I have submitted for publication in brochures, newsletters, display boards, social media accounts, and websites without notifying me. I also acknowledge that LGS Foundation may choose not to use my photo(s) at this time but may do so at its own discretion at a later date. I understand that once my image is posted on the LGS Foundation website, the image can be downloaded by any computer user. Therefore, I agree to indemnify and hold harmless LGS Foundation, its agents, volunteers, and employees from any claims. I agree to waive and release any and all claims against the LGS Foundation and its contractors and licensees relating to my name, my likeness, the photo(s) and their uses and/or distribution in any version or media throughout the universe, including without limitation, any rights and claims relating to royalties or compensation, editing, alteration, copyright, distribution, misappropriation, libel, false light, rights of privacy and/or publicity. The LGS Foundation reserves the right to discontinue use of photos without notice.

To request that your child’s photo(s) be removed from the website and/or other materials, please submit a written request by email to I fully understand the contents, meaning, and impact of this release.