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Newly Diagnosed 

On this journey, you are never alone.

Regardless of the age at diagnosis, the LGS (Lennox-Gastaut Syndrome) journey can certainly be overwhelming. You can rest assured that the LGS Foundation, our family ambassadors, and volunteers will be available when you need information, support, or just a sympathetic ear.​
      Finding Your Community
We understand the importance of connecting with your
community. Our team is made up of compassionate
caregivers who've lived through the highs and lows of the
LGS odyssey, and medical professionals 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!  
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. 

“In the beginning, everything was so new and I was on a mission to get him any kind of help I could. And as the 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

Request a Newly Diagnosed Packet