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.
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 plan to find the cures for LGS.
Step 1: Support Families New to LGS
The LGS Foundation is here to help regardless of the age at diagnosis. We strive to be the center for education and support for families. 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! We are strongest when we come together as one community, raise our voices, and lead the charge for a cure.
Step 2: Educate and Empower LGS Families and the LGS Community
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. Take the next steps towards the cures by connecting families with our growing LGS community.
Step 3: Get Families Living with LGS Involved in Advancing Research and Hear Their Voices!
Your Voice Matters! You have the power to help patient families, researchers, and scientists understand how LGS starts and progresses and what matters most to you. You are the experts! Bringing together our collaborative voices, we can transform the way new treatments and therapies are developed and tested.
Step 4: Build an LGS Collaborative Research Network and Fund Patient-Driven Research
The LGS Foundation is committed to advancing cutting-edge research that will lead to Disease-Modifying Therapies for LGS. What is a disease-modifying therapy? It’s a treatment that targets the root causes of LGS and not just the symptoms (e.g. seizures). Science is showing us that if we target the root causes of LGS, it is possible to make huge impacts in the lives of those living with LGS.
The LGS Foundation is also committed to advancing research on optimal care for those with LGS and their families.
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 twelve projects around the world, and this number is poised to grow rapidly in the coming years.
Patients must be involved in accelerating the research in LGS. Patient families are the experts on LGS and can help create meaningful, impactful, relevant, timely therapies when they are equal partners in research efforts. This is why the LGS Foundation is building an LGS Collaborative Research Network. In 2021, we hosted the first-ever LGS Research Meeting of the Minds. Scientists from all over the world came together to discuss how we will find cures and families came together to discuss what a cure looks likes to them. This conversation of the first of many that bring together patient families and researchers to drive LGS research to new heights.
Step 5: Freely Share the Latest Discoveries and Learnings
We must openly share what we know and learn from our LGS journies and from scientific research. LGS is hard. Finding information and data should not be! Sharing information and data will take us up the LGS mountain and bring us even closer to those cures!
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.
Updated: August 26, 2022