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Get to Know Lennox-Gastaut Syndrome Foundation

Updated: Sep 14, 2022

About Lennox-Gastaut Syndrome (LGS)

Lennox-Gastaut Syndrome (LGS) is a rare epilepsy syndrome that develops in very young children. Nobody is born with LGS. It evolves over time from early life seizures. The 4 key features of a diagnosis of LGS are:

  1. Seizures beginning in early childhood.

  2. More than one seizure type with tonic seizures occurring in almost all with an LGS diagnosis.

  3. Abnormal brain waves on an electroencephalogram (EEG) test including Slow Spike-and-Wave (SSW) and Generalized Paroxysmal Fast Activity (GPFA).

  4. Developmental delay and/or intellectual disability.

LGS is a rare disease (less than one in every 2,000). There are many causes of seizures that can evolve into LGS. In most but not all cases, a cause can be found. Causes include birth trauma, abnormal brain formation, infections, genetic factors, metabolic disorders, seizures as an infant (spasms), head injury, and autoimmune disorders.

LGS Clinical Features

Seizures that evolve into LGS can be due to a wide range of causes. Diagnosis of LGS, and the abnormal brain waves associated with it, requires an electroencephalogram (EEG). Persons with LGS have several types of seizures. These can include tonic, atypical absence, myoclonic, focal impaired awareness, and generalized tonic-clonic seizures. Persons with LGS have varying degrees of intellectual disability and behavioral issues. Some struggle with aggression. Some meet autism spectrum disorder criteria. Most children with LGS also have motor difficulties. Sleep problems are also common and include trouble falling asleep, staying asleep, waking up, frequent nighttime seizures, and other issues. Individuals with LGS are at a higher risk of death. Common causes are SUDEP, aspiration pneumonia and accidental injury.

Get to Know Lennox-Gastaut Syndrome Foundation

Our Vision: To end the devastation and suffering caused by LGS.

Our Mission: The Lennox-Gastaut Syndrome (LGS) Foundation Is A Nonprofit Organization

Dedicated To Improving The Lives Of Individuals Impacted By LGS Through Advancing Research, Awareness, Education, And Family Support.

The LGS Foundation is the only global organization dedicated to improving the lives of individuals living with Lennox-Gastaut Syndrome (LGS). In 2008, the LGS Foundation was founded by Christina SanInocencio who watched her brother Michael, and her parents, struggle at the hands of LGS for years. It was created so families would not be alone. In the ensuing years, the fundraising and commitment of the LGS community have enabled the LGS Foundation to support fundamental research in the laboratory that has led to groundbreaking discoveries. By expanding our knowledge of the underlying biology of the disease, researchers have paved the way for creating new treatments. We have also grown our community of support to over 7,000 members and increased our family support programs to target the needs of our growing number of LGS families.

I am Especially Proud of...

The highlight of the many LGS Foundation programs is the biennial Families & Professionals conference. It is here that the LGS community gathers to hear cutting-edge presentations on the latest advances in LGS research, finding the best possible care, and navigating the LGS maze across the lifespan. The most recent conference was held in June, 2022 in Dallas, TX bringing together more than 380 individuals with LGS, family members, caregivers, healthcare professionals, researchers, a wide array of exhibitors, and others from across the globe to learn from each other and to find ways to improve the lives of those impacted by LGS.

Excited to REN Because...

LGS can develop from other epilepsy syndromes such as Infanitle Spasms, Tuberous Sclerosis Complex, and Ohtahara Syndrome. The LGS Foundation has grown in the last few years and we’re excited that families searching for a community of support continue to find us. But we are a rare disease and we’re well aware of the fact that we need our partners in the rare epilepsy community to stand together as a strong voice. We believe in mentoring and being mentored, sharing helpful resources, and collaborating with our rare epilepsy partners. There is much to be done. We know it will get done faster if we do it together.

My Journey and Motivation...

When my son Theo was born, the LGS Foundation didn’t exist. Like so many families, we were alone, terrified, and having to navigate all of the complex systems that can be intimidating and overwhelming when your child has special needs. Theo was diagnosed with Infantile Spasms at 3 months of age and LGS when he was 4. When Theo was 7, I began working with families on systems navigation, advocacy, and parent-to-parent support in California where my family lives. It wasn’t until I attended the LGS Foundation’s conference in Cerritos, CA that I realized how much I had needed to find my own ‘tribe’. In 2018 I became the foundation’s Director of Family Support. I never tire of hearing the expressions of relief or seeing the look on a caregiver’s face when she/he realizes they’re not alone. Some of our families have gone it alone for years and finding a group of individuals who can relate to their struggle can be life-changing.

By Jennifer Griffin, Director of Family Support

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