2 weeks Ago
SAN DIEGO , April 22, 2025 /PRNewswire/ -- This Saturday, April 26, 2025 , the Lennox-Gastaut Syndrome (LGS) Foundation will be Stepping Together for a Breakthrough with families, friends, and communities around the world at their 10th Annual Walk 'n' Wheel for LGS Research. Lennox-Gastaut Syndrome (LGS) is a rare and severe form of childhood-onset epilepsy, characterized by multiple treatment-resistant seizure types and a high burden of comorbidities, including significant developmental delays. The diagnostic journey for LGS can span several years, often delaying access to critical treatment options and leading to unnecessary or inaccurate diagnostic procedures.
The management of LGS is further complicated by the limited clinical evidence regarding the comparative effectiveness of antiseizure medications and other treatment strategies. Beyond seizure control, individuals with LGS face a broad spectrum of challenging comorbidities, including mild to severe developmental delays, sleep disturbances, behavioral and psychiatric issues, and an increased risk of injury or premature death from seizures, including Sudden Unexpected Death in Epilepsy (SUDEP). To improve the care of people with LGS, Anthony Fine , MD of the Mayo Clinic and Juliet Knowles , MD, PhD of the Stanford University School of Medicine, seek to establish expert consensus recommendations on the care of persons with LGS focusing on management of epilepsy, comorbidities, and outcomes.
This is a major step forward for the LGS community, as it will provide clear direction, reduce uncertainty, and help families make informed decisions about care and treatment. "As I look back on our journey, I remember all the medications, diets, and treatments we tried. But what really sticks with me is the overwhelming sense of hopelessness—there was no clear plan or guidance to help my child.
We were just throwing everything at him, hoping something would work," shares Kayleigh Keen , Mom to Dylan, who lives with LGS. "Having a clear plan of action from the start, with treatments that have shown real improvements for patients, could have completely changed our experience." For more information or to get involved, visit the LGS Foundation's website .
About the LGS Foundation The Lennox-Gastaut Syndrome (LGS) Foundation is a nonprofit organization dedicated to improving the lives of individuals impacted by LGS. It educates the public about LGS, supports families living with the condition, and drives research to find the cures. SOURCE Lennox-Gastaut Syndrome (LGS) Foundation.
