A Message for New Families
On this journey, you are not alone.
We Understand
Regardless of the age at diagnosis, the Lennox-Gastaut Syndrome (LGS) journey can be overwhelming. Therefore, our message for new families is that the LGS Foundation, our family ambassadors, and volunteers are here to support you when you need information, support, or an ear to listen. The LGS Foundation is an organization that families with LGS run. We understand.
Find Your Community
We understand the importance of connecting with your community. In addition, our team consists of compassionate LGS caregivers who have lived through the highs and lows of the LGS odyssey so our message for new families is that we are here to help. Furthermore, 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. Ultimately, we strive to create a supportive network that addresses your needs.
No matter what point of the journey you’re on, LGS is certainly life-changing. For that reason, we are here to support you!
“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
Get Connected
Get Support
LGS 101 for Newly Diagnosed Families
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
- CDC – What is “Early Intervention”?
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Navigating the LGS Maze Newsletter
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Contact us anytime
For questions or help, please contact Jen Griffin, Director of Family Support, at familysupport@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.
Updated 12/11/24 (KK)