Lennox-Gastaut Syndrome (LGS) Foundation's Advocates for LGS Program Brings Awareness to Rare Disease

News provided by

Lennox-Gastaut Syndrome (LGS) Foundation

Aug 08, 2024, 11:35 ET

SAN DIEGO, Aug. 8, 2024 /PRNewswire/ -- The Lennox-Gastaut Syndrome (LGS) Foundation is proud to announce that this month, dedicated advocates from the LGS community will be meeting with their congressional representatives to discuss vital issues affecting those living with Lennox-Gastaut Syndrome. This crucial advocacy work is being undertaken to honor and support the many individuals and families impacted by this rare and severe form of epilepsy.

Lennox-Gastaut Syndrome is a complex and challenging condition that begins in early childhood and is characterized by multiple types of seizures, developmental delays, and a range of other neurological and behavioral issues. Despite its profound impact on those affected, LGS remains underrepresented in public discourse and policy discussions.

The Advocates for LGS program was launched in 2002 and consists of 43 LGS family members across the U.S. who are dedicated to telling their stories to effect change. Each year in August, advocates meet with their Members of Congress at their in-district offices and educate them on the issues that are important to the rare disease community by sharing our stories and making sure our national leaders understand what it is like to live with daily seizures and multiple-chronic health challenges.

"The most important thing we bring to these meetings is our own LGS story," said Jennifer Griffin, Director of Family Support at the LGS Foundation, Leader of the Advocates for LGS, and mother to a 22-year-old son who has LGS. "LGS is devastating and many of our families are not only dealing with the disease, but also the immense economic, social, and emotional burden that comes with it. By sharing their stories, the Advocates for LGS are making a difference that will impact the future of individuals with LGS and their families."

Learn more about how the Advocates for LGS are advocating to improve the lives of everyone impacted by LGS at www.lgsfoundation.org/advocates-for-lgs.

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 cutting-edge research to find the cures.

SOURCE Lennox-Gastaut Syndrome (LGS) Foundation