Information for the Newly Diagnosed
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 for families of 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 of medical professionals and LGS experts from around the world who have a wealth of experience and knowledge in the treatment of this rare disease.
No matter what point of the journey you’re on, LGS is life-changing. We are here to support you!
- Find your Local LGS Family Ambassador
- Join us on Social Media
- Join our Newly Diagnosed Support Group
- Request a New Family Packet
Newly Diagnosed Checklist
A common question after receiving the diagnosis of LGS is “Where do I begin?” The LGS Foundation has compiled a list to help you get started and will be here to answer your questions. Take it one step at a time and know that we’re here to help.
Get Support and Find Your Community
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