A Message for New Families
On this journey, you are never alone.
Regardless of the age at diagnosis, the Lennox-Gastaut Syndrome (LGS) journey can be overwhelming. You can rest assured that the LGS Foundation, our family ambassadors, and volunteers will be available as you need information, support, or an ear to listen. The LGS Foundation is an organization run by families with LGS. We understand.
Find Your Community
We understand the importance of connecting with your community. Our team is made up of compassionate LGS caregivers who have lived through the highs and lows of the LGS odyssey. We are here to help. We are also made up of medical professionals and LGS experts from around the world who have a wealth of experience and knowledge in treating this rare disease.
No matter what point of the journey you’re on, LGS is life-changing. We are here to support you!
Learn About LGS
From the voice of others…
“In the beginning, everything was so new and I was on a mission to get him any kind of help I could. And as time went on, I found that if he was in a place where he was happy and content, that’s what mattered. I just realized that if he’s happy then I’m doing what’s best for him.”
—Rachel, mother of adult son Andrew
“I think it’s important to be a voice and to make sure you really advocate for what’s best. Just because somebody gives you a piece of information, it might not be what’s best for your child. It’s really important to push for what you know your child needs, whether that’s a seizure protocol or a better spot in the classroom or something new on an IEP [Individualized Education Program].”
—Andee, mother of young son Kannon
“There is hope. And there are so many people out there who are working through the same thing, who can identify with what you’re going through, and who can offer support and encouragement to you. So just keep pressing on. You’re doing great.”
—Darla, mother of teenage son Aaron
Additional Resources to Get You Started
- Learn about Seizure Types in LGS
- Start at Seizure Diary with Seizure Tracker
- Create an Individualized Seizure Action Plan (I-SAP)
- Find a Doctor
- Find a Comprehensive Care Center
- Learn More About Treatments for LGS
- Learn How to Talk With Family About Your Child’s Disability
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Contact us anytime
For questions or help, please contact Jen Griffin, Director of Family Support, at Jen@LGSFoundation.org
The information here is not intended to provide diagnosis, treatment, or medical advice and should not be considered a substitute for advice from a healthcare professional. The content provided is for informational purposes only. LGSF is not responsible for actions taken based on the information included on this webpage. Please consult with a physician or other healthcare professional regarding any medical or health related diagnosis or treatment options.