Finding the Cures, Together
What is LGS?
Lennox-Gastaut Syndrome (LGS) is a severe form of epilepsy that typically becomes apparent during infancy or early childhood. Children with LGS experience frequent, uncontrollable seizures and suffer from many different types of seizures, including tonic-clonic, atonic, tonic, and atypical absence seizures. The hallmark features of LGS are the very abnormal brain wave patterns of slow spike and wave (SSW) and generalized paroxysmal fast activity (GPFA) that are seen on the EEG test. Children with LGS often develop cognitive dysfunction, delays in reaching developmental milestones, sleep problems, behavioral issues, and physical disabilities. Some children with LGS survive into adulthood and the majority are completely dependent on others for their daily care.
LGS may be treated with drugs, diets, neural stimulating devices, brain surgery, and/or alternative therapies but of the more than 30 therapies that exist to treat seizures, no specific therapy is effective to stop the seizures in LGS. For most patients, the odds of achieving seizure freedom are less than 15% and the odds of having typical intellectual ability are less than 5%. Our goal at the LGS Foundation is to end the devastation and suffering caused by LGS.
“Bringing together our collaborative voices, we can transform the way new treatments and therapies are developed and tested.”
There is no cure for LGS. We must change this!
The whole LGS Community must lead the fight to find those cures. We want to do our part! To that end, the LGS Foundation has launched its Finding the Cures Together program. Here we have laid out our steps to find the cures for LGS.
Steps Towards the Cures for LGS
We understand the importance of connecting with a community. Being part of a supportive group can be one of the best ways to find a safe place to connect with others who can relate to your experience.
It is our mission to ensure that nobody walks the LGS journey alone.
To date, we have built an amazing LGS community of support that is over 6000 members strong! And we add about 50 new members to our community every month!
The LGS Foundation provides support, education, and advocacy programs to help empower caregivers and families.
Patient families are the experts! Bringing together our collaborative voices, we can transform the way new treatments and therapies are developed and tested.
Patients must be involved in accelerating the research in LGS. Patient families are the experts on LGS and can help create meaningful, impactful, relevant, and timely therapies when they are equal partners in research efforts.
The LGS Foundation is bringing together patient families and researchers to drive LGS research to new heights with our LGS Collaborative Research Network.
Join us at one of our many research conferences as we bring researchers and those living with LGS together to discuss how we can find the cures, together.Upcoming Research Conferences
Patient families have the power to help clinicians, researchers, and scientists understand how LGS starts and progresses and what matters most to you. We are the experts!
We are harnessing the power of the patient family community to ensure that research on LGS is relevant for those living with LGS and their loved ones.
We are committed to advancing cutting-edge research that will lead to Disease-Modifying Therapies that target the root causes of LGS and not just the symptoms (e.g. seizures).
Since 2014, the LGS Foundation has funded over one million dollars in LGS research. The Foundation’s Cure LGS 365 Research Grant has provided funds for over a dozen projects around the world, and this number is poised to grow rapidly in the coming years.
If we are successful, the science we accelerate to find the cures for this catastrophic epilepsy disorder of early life will usher in cures for other circuits and aging disorders of the brain.Research Funding Opportunities
If you want to go fast, go alone. If you want to go far, go together.
That’s our plan. Are you ready to help? If so, click here to help us solve the mystery of LGS.