LGS Awareness Day focuses on solving the mystery of this rare disease

SAN DIEGO, Oct. 26, 2021 /PRNewswire/ -- On November 1, the Lennox Gastaut Syndrome (LGS) Foundation invites families, researchers, clinicians, and advocates around the world to observe International LGS Awareness Day. On this day, thousands of people will come together to show that the challenges associated with LGS are tough, but so are those affected by this rare disease.

LGS is a severe epilepsy syndrome that starts in very early childhood and leads to abnormal brain development and intellectual disability. It is considered one of the Developmental and Epileptic Encephalopathies (DEEs). LGS frequently evolves from  treatment-resistant epilepsy, a brain disorder characterized by seizures. Half of the cases of LGS are caused by mutations in genes that can lead to early-life seizures and the other half of cases are caused by injuries that occur around birth. In approximately 20-30% of cases, the cause is unknown.

To kick off LGS Awareness Day, LGS Foundation Executive Director, Dr. Tracy Dixon-Salazar, and her daughter and LGS patient, Savannah, will share their journey on a special episode of The Balancing Act, a Lifetime TV show. Families across the country will join them in sharing their personal stories via social media and organizing their own LGS awareness or fundraising activities throughout the month. To learn how to support or donate to their efforts, visit the LGS Foundation website.

As part of the many awareness initiatives organized, more than 60 buildings and monuments will shine a light on LGS by Illuminating for LGS on November 1, including The Las Vegas City Hall, NASCAR Hall of Fame, M&T Stadium, Niagara Falls, Nationwide Children's Hospital, and many bridges and monuments. All will light up green and purple, the colors for LGS awareness.

LGS affects approximately 50,000 in the United States and 1 million worldwide. Like many rare diseases, LGS can be a complete mystery when you first hear about it. LGS Awareness Day shows that those affected by the disease don't have to solve the mystery alone.

"While there is no cure for LGS, there is a hopeful path forward," said Dr. Dixon-Salazar. "The status quo is that children with LGS and pre-LGS are having their lives robbed from them, and adults with LGS are living with the burden of unrelenting seizures and side effects. The LGS Foundation is harnessing the power of the patient family community to change this and give every child and adult a chance to live their life to the fullest."

To learn more about LGS Awareness Day, visit lgsfoundation.org/lgs-awareness-day-event/ 

About the LGS Foundation
The Lennox-Gastaut Syndrome (LGS) Foundation's mission is to improve the lives of individuals impacted by LGS through advancing research, awareness, education, and family support. To learn more about LGS or to support our efforts visit LGSFoundation.org

SOURCE LGS Foundation

Related Links

https://www.lgsfoundation.org