About LGS
- Like many rare conditions, Lennox-Gastaut Syndrome can be a complete mystery when you first hear about it. Explore this section to get a thorough understanding of LGS—including its causes, symptoms, diagnosis and treatment.
New to LGS
- A diagnosis of LGS is deeply unsettling and can leave you at a loss as to where to turn for help and guidance. We’re here for you. In this section you will find information, resources, and communities of support for the challenging road ahead.
For Families
- If a loved one is living with LGS, the entire family shares in the difficult journey. How can you keep them safe? Find appropriate medical care? Get the support you need? This section gives answers to these and other critical questions.
About Research
- Even as our understanding of LGS grows, there is so much more to learn. From research grants to conferences, from publications to voice of the patient family, this section provides avenues for furthering your knowledge and impact.
Get Involved
- Host a fundraiser. Volunteer at an event. Shop our LGS store. These are just some of the ways you can lend your personal support to our mission. Check out this section to get started.
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Home / Share Your Story

Share Your Story

Addyson & Braxtin Share your story At 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 our 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 12/05/24 (AM)