LGS is a rare and severe form of epilepsy most commonly diagnosed in children. It’s a complex seizure disorder that is resistant to medication and often causes regression and intellectual disability.
New York, NY (PRWEB) October 30, 2012
The first worldwide observance of Lennox-Gastaut Syndrome (LGS) will take place on November 1, 2012. There will be activities across the United States, Canada, Europe, and elsewhere that will focus on raising awareness and improving education of Lennox-Gastaut Syndrome, a rare and severe form of childhood-onset epilepsy. November 1st was selected as the day to focus on LGS because it kicks-off Epilepsy Awareness Month.
“LGS is a rare and severe form of epilepsy most commonly diagnosed in children between the ages of one and six,” explains LGS Foundation’s President, Christina SanInocencio. “It’s a complex seizure disorder that is resistant to medication and often causes regression, cognitive dysfunction, behavior disturbances, and more.”
Characteristics of Lennox-Gastaut Syndrome include:
- Frequent, uncontrolled seizures
- Multiple Seizure Types
- A resistance to medication and/or therapies
- Intellectual disability
- Behavior disturbances
- And many other co-morbidities
In the U.S., it is estimated that Lennox-Gastaut Syndrome affects less than 100,000 people. Although LGS is most often diagnosed during childhood, it often persists into adulthood.
Earlier this year, members of the LGS Foundation were given the opportunity to cast their vote in choosing an annual date for LGS awareness. The LGS Foundation has invited dozens of patient organizations, research institutions, non-profit organizations, universities, and companies to partner with them to raise awareness of LGS day.
Activities surrounding LGS awareness day include:
- Distribution of printed materials on LGS, free of charge
- Development of seizure-first aid poster, available in printed form or for download
- Development of LGS mobile app
- Production of new LGS awareness documentary, produced by the LGS Foundation
- Media outreach
- Awareness event in New York City on November 1st with documentary debut
- Organization of other awareness events across the world
- Circulation of awareness pledge
“An LGS Awareness Pledge will encourage our members, partner organizations, and epilepsy advocates to spread the word about Lennox-Gastaut Syndrome,” says SanInocencio. “Additionally, Lundbeck Inc., the presenting sponsor of LGS Awareness Day, will be donating $5 per pledge to the LGS Foundation for the first 1,000 pledges.”
“Over the past few years, we’ve been humbled by the strength and perseverance of those within the LGS community, and are honored to be the presenting sponsor of the first LGS Awareness Day,” said Michael Hanley, director of epilepsy marketing at Lundbeck. “As a company, we’ve pledged to do all we can to help LGS patients and their caregivers, and we’re proud to provide a little added incentive to encourage others to make this commitment.”
A special awareness event in New York City is planned for November 1st and will be open to the public. LGS advocates across the world are also encouraged to participate by attending or planning an awareness event locally.
SanInocencio adds, “It’s incredibly important for LGS families to get involved. Often, caregivers feel as if they are alone and that others do not understand the complexity of Lennox-Gastaut Syndrome. By participating in LGS awareness day, families have a unique opportunity to get the word out about LGS.”