BOHEMIA, N.Y., Oct. 29, 2020 /PRNewswire/ — On November 1st, the LGS Foundation will join families and partners from around the world to observe 9th annual Lennox- Gastaut Syndrome (LGS) International Awareness Day. On this day, families affected by LGS will come together to increase public awareness of this rare disease and share their stories of hope for the future.
LGS is a severe epilepsy syndrome that starts in very early childhood and leads to abnormal brain development and progressive intellectual disability. Half of the cases of LGS are caused by genes that can lead to early life seizures and the other half of cases are caused by injuries that occur around birth. Children develop intractable seizures and those seizures then lead to the detrimental slow spike and wave (SSW) EEG pattern characteristic of LGS. Once SSW is present, learning and development become overwhelmingly difficult. LGS is as common as Lou Gehrig’s disease or cystic fibrosis but is virtually unknown by the general population. The disease affects approximately 50,000 in the United States and 1 million worldwide.
This weekend, the LGS Foundation, the leading organization in the world dedicated to Lennox-Gastaut Syndrome, is hosting its signature awareness event for LGS Awareness Day in advance of a month of awareness activities which will occur in Epilepsy Awareness Month. The event is being held virtually on Sunday, November 1st @ 6 pm (Eastern), 5 pm (Central), 4 pm (Mountain) & 3 pm (Pacific).
“We know how important it is to keep our community together and continue to work towards our goals of raising awareness and raising support for research. We couldn’t let COVID hinder our important mission, so we moved the event online,” says Natalie Gilmore, LGS Foundation Board President, and event organizer.
In addition to the LGS Foundation’s International LGS. Awareness Day Concert Benefit, featuring master of ceremonies Paula Poundstone and musical guest Noah Guthrie, dozens of buildings and landmarks worldwide will illuminate in the LGS colors of purple and green for LGS Awareness.
“Many, if not most, of those with LGS, are unable to speak for themselves due to the years of brain damage caused by uncontrolled seizures. This inspired our theme this year I Am A Voice For LGS Awareness“, said Gilmore. “We’re encouraging our supporters to join us in raising their voices too.”
The LGS Foundation is the only organization in the world dedicated to supporting families living with this LGS and are committed to funding research, educating about LGS, and providing crucial family support.
About Lennox-Gastaut Syndrome
Lennox-Gastaut Syndrome is a rare and severe form of childhood-onset epilepsy. The syndrome is usually diagnosed before the age of 8 years old and is characterized by frequent, uncontrolled seizures, multiple seizure types, resistance to medication and/or therapies, and intellectual disability. In the United States, it is estimated that nearly 50,000 people are affected and more than 1 million people worldwide.
For more information on Lennox-Gastaut Syndrome or LGS Awareness Day, please visit www.lgsfoundation.org
CONTACT: Tracy Dixon-Salazar, [email protected], 718-374-3800
SOURCE LGS Foundation