Finding the Cures, Together

“Together we can change the future for those with Lennox-Gastaut Syndrome.”

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, and behavioral issues. Some children with LGS survive into adulthood and the majority are completely dependant 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%.

​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 is excited to announce our new Finding the Cures Together program. Above we have laid out the steps that we will take to get to those cures! Since 2008, we have built this amazing LGS community of support that is nearly 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 the cures for those with LGS. The steps include:

  1. Support the Newly Diagnosed – The LGS Foundation is here to help regardless of the age at diagnosis. We strive to be your center for education and support. It is our mission to ensure that nobody walks the LGS journey alone.
  2. Help you Find Your Community – We understand the importance of connecting with your community. ​Being part of a support 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 with our growing LGS community.
  3. Get Involved – Your Voice Matters! You have the power to help 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.
  4. Fund Research – The Foundation supports innovative research and partnerships to push forward promising treatments and cures. Help us take the next step towards the cures. Donate Today.
  5. Share Latest Discoveries – 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 that mountain and bring us even closer to those cures!

​As we move up the Cure LGS mountain together, the LGS Foundation will be hosting our first ever LGS Research Meeting of the Minds in 2021. Scientists from all over the world will come together to discuss how we will find those cures and families will come together to discuss what a cure looks like. We hope you will join us.

​The LGS Foundation will also continue to fund cutting-edge research as we lead the search for the first-ever Disease-Modifying Treatment 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 tells us that if we can target the root causes, we can make a huge impact on the lives of those with LGS. Be sure to follow us on social media and sign up for our Newsletter to hear the latest on newly funded research!

Why Do We Fund Research?

A lack of research funding results in a lack of novel treatment options, clinical trials on new treatments, and the development of disease-modifying therapies. Patients with rare diseases that have no cure or FDA-approved treatment options have to settle for treatments that manage the symptoms of the disease instead of treatments that can address the underlying problem.

Since our inception in 2008, LGSF has awarded more than $500,000 in funding for twelve projects around the world. The LGS Foundation’s seed grant program awards one-year research grants up to $30,000 and two-year grants up to $50,000 to young investigators, physician residents, and clinicians who are interested in studying Lennox-Gastaut Syndrome. Our seed grants are intended to help researchers explore novel ideas and answer questions related to finding the cures for LGS. Learn more about our research funding program here.