A Lifetime Unseen: 50,000 Americans Live With Lennox-Gastaut Syndrome, a Rare Epilepsy With No Cure

On International LGS Awareness Day™, November 1, families ask the world to see LGS through Faces of LGS: Real Stories, Real Research, with Luminary support from Lundbeck

SAN DIEGO, Oct. 22, 2026 /PRNewswire/ -- Geordan had his first seizure at about age three. His family waited six years to learn its name: Lennox-Gastaut Syndrome (LGS), a severe epilepsy that begins in early childhood and often leads to lifelong disability.

"When he had that first seizure, we were just told it's just a seizure… About six years later he got his diagnosis of LGS." - Crystal Ferguson, Mom to Geordan, North Carolina

Geordan's experience reflects a challenge many families face: years of uncertainty before receiving an LGS diagnosis. The LGS Foundation is working to change that through research, education, advocacy, and support, including its Precision Diagnoses Grand Challenge, which aims to cut that wait from years to months.

Through Faces of LGS: Caregiver Story Wall, the Foundation also aims to bring visibility to the experiences of individuals and families living with LGS by featuring family photos, videos, and voices, along with the research reality behind each story.

Other stories cover drug-resistant seizures, communication challenges, behavior, the funding gap for rare epilepsies, and hope for better treatments and care.

What Is LGS?

LGS is a rare, severe epilepsy that usually begins before age 3. Unlike many forms of epilepsy, it causes several types of seizures, and they rarely respond to medication. More than 1 million people worldwide live with LGS.

Behind Every Story, a Research Question

A diagnosis is only the beginning. Preliminary data from the LGS-CORE Study, the LGS Foundation's real-world registry of over 100 families, show what daily life looks like after it:

• Seizures come in clusters: 78% of people with LGS have seizure clusters, several seizures close together.
  
  
• Injuries happen: 37% have injured their head or face during a seizure.
  
  
• Hospital stays are common: 27% have been hospitalized for seizures or seizure-related injuries.
  
  
• Tonic seizures lead: Seizures that suddenly stiffen the body are the most common type.

These findings are being presented at the NORD Rare Diseases & Orphan Products Breakthrough Summit on October 25-27. Read the LGS-CORE Registry Data release.

"LGS hides in plain sight. Families live with it for decades, through childhood and into adulthood, often without anyone around them understanding what they face," said Dr. Tracy Dixon-Salazar, CEO of the LGS Foundation, who lost her daughter, Savannah, to LGS in 2025. "What isn't seen isn't studied, and what isn't studied can't be cured. On November 1, we ask the world to see LGS."

Make LGS Visible

• Illuminate for LGS: Landmarks, homes, and businesses illuminate in purple or green November 1 to 7. This year, Niagara Falls, Peace Bridge in Buffalo, NY, and Eiffel Tower Park in Paris, TN, among other landmarks, will light up.
  
  
• Share a face: Post a Faces of LGS story from the Caregiver Story Wall using #LGSawareness.
  
  
• Give: Make a gift to support research or start your own personal fundraiser.

For Families

Families can connect with a free, confidential Family Ambassador, join a caregiver support community of more than 8,000 members, or start with resources for newly diagnosed families. Families can also enroll in the LGS-CORE Study to help answer the research questions behind their own stories.

For Industry Partners

Companies working in LGS can learn about the LGS and Associated DEE Research Accelerator and access to LGS-CORE data at [email protected].

Thank You to Our Partners

The LGS Foundation thanks its 2026 International LGS Awareness Day™ partners for their support and for helping to shine a light on LGS.

• Luminary Sponsor: Lundbeck
• Beacon Sponsor: LivaNova
• Shine Sponsors: Jazz Pharmaceuticals and Praxis Precision Medicines
• Spark Sponsors: Cosette Pharmaceuticals, Neurelis, and SK Life Sciences

About the LGS Foundation

The Lennox-Gastaut Syndrome (LGS) Foundation is dedicated to improving the lives of individuals affected by LGS and associated developmental and epileptic encephalopathies through research, education, advocacy, and support. The Foundation advances research that overlaps LGS with the many other DEEs that affect the community it serves.

SOURCE Lennox-Gastaut Syndrome (LGS) Foundation