#United States #San Diego #Epilepsy Research #Lennox-Gastaut Syndrome #LGS Foundation

LGS Foundation's Walk for a Brighter Future

This Saturday, April 26, 2025, the Lennox-Gastaut Syndrome (LGS) Foundation invites families, friends, and supporters around the globe to participate in their 10th Annual Walk 'n' Wheel for LGS Research event. This gathering symbolizes hope and determination as attendees step together to foster breakthroughs in understanding and managing Lennox-Gastaut Syndrome.

Lennox-Gastaut Syndrome is a rare and severe form of childhood-onset epilepsy, defined by various treatment-resistant seizure types and a plethora of coexisting conditions. Children and families impacted by LGS often face a challenging diagnostic journey that can last years, hindering access to essential treatment and potentially resulting in unnecessary medical procedures. The management of LGS is complex, primarily due to the scant clinical evidence on the effectiveness of antiseizure medications and therapeutic strategies. Beyond the seizures themselves, those with LGS may encounter significant challenges such as developmental delays, sleep disturbances, behavioral issues, and an elevated risk of severe incidents like Sudden Unexpected Death in Epilepsy (SUDEP).

In an initiative led by Anthony Fine, MD from the Mayo Clinic and Juliet Knowles, MD, PhD from Stanford University School of Medicine, the LGS Foundation aims to establish a consensus on the management of LGS. This initiative is crucial for improving the care of individuals affected by the syndrome, bringing clarity, reducing uncertainty, and empowering families to make informed decisions about treatment and care.

Kayleigh Keen, a mother of a child living with LGS, shares her emotional journey, reflecting on the overwhelming sense of despair they experienced while searching for effective treatments without clear guidance. “We were trying every possible medication, diet, and treatment, yet there was no comprehensive plan to follow, and it felt hopeless. Understanding from the start what might work could have transformed our experience drastically,” she recounts.

As families prepare for the upcoming Walk 'n' Wheel, the LGS Foundation continues to advocate for better resources, education, and research funding to improve the future for those living with Lennox-Gastaut Syndrome. The event serves not only as a fund-raising endeavor but also as an opportunity for families to connect and share their experiences, emphasizing the community aspect of their journey together.

To find out more about the LGS Foundation and learn how you can contribute to their mission, please visit their official website. Together, we can drive the change necessary for a brighter tomorrow for individuals affected by Lennox-Gastaut Syndrome.

About the LGS Foundation

The Lennox-Gastaut Syndrome Foundation is a nonprofit organization committed to enhancing the lives of those affected by LGS. The Foundation educates the public about the syndrome, supports families impacted by it, and propels research aimed at finding effective treatments and cures.