New Resources for Parents of Children with a Severe Type of Epilepsy
Contact (for working media only, please):
Kisha James, (301) 918-3768, kjames@efa.org
New Resources for Parents of Children with a Severe Type of Epilepsy
Washington, D.C., October 19, 2009 – The Epilepsy Foundation has launched a new online resource, www.lgsandmychild.org for parents of children with Lennox-Gastaut syndrome (LGS), a complex and severe form of epilepsy. The Web site is a place for parents to connect and find the tools, resources and information essential to effective management and treatment of this condition.
LGS causes frequent seizures of multiple types and is often very difficult to treat. The condition can result in permanent developmental delays, behavior problems and mental retardation. The web site offers parents challenged by this condition a live online social networking environment where they can share questions, information and advice with others who are experiencing similar challenges faced with LGS. “Parents who are coping with a condition as severe as Lennox-Gastaut syndrome often feel they are alone. Our new site is a place where parents can come for the most up-to-date information on their child’s condition as well as a connection to a community of families living with LGS who know what it’s like,” said Eric Hargis, President and CEO of the Epilepsy Foundation.
According to a national caregiver survey conducted by the Epilepsy Foundation in 2009, less than 25 percent of caregivers surveyed said they knew how to find information on government and community programs for children with LGS. Forty-seven percent were seeking information about better treatment options to secure better seizure control for their child.
The Epilepsy Foundation’s www.lgsandmychild.org helps parents and caregivers keep up with the latest research and treatment, advocate for a cure and become an involved member of their child’s medical team. In addition, an Ask-The-Expert Forum featuring John Pellock, M.D., Professor and Chairman of the Division of Child Neurology at Virginia Commonwealth University, is being held on October 29, 2009 from 4:30-5:30 PM (ET). Parents can pose questions and get answers from this renowned specialist in LGS and epilepsy in children. “Ask-the-Expert Forums are an opportunity to get information and answers directly to the people who need it,” said Dr. Pellock. The online Forum will be accessible through www.lgsandmychild.org. This outstanding resource was made possible by a sponsorship from Eisai Inc.
About Epilepsy
Epilepsy is a serious neurological condition that affects almost 3 million Americans and 50 million people worldwide. The condition produces seizures, which can range from a momentary disruption of the senses, to short periods of unconsciousness or staring spells, to convulsions. A seizure happens when a brief, strong surge of electrical activity affects part or all of the brain. When a person has two or more unprovoked seizures, they are considered to have epilepsy. Currently there is no cure for epilepsy; however, more than half of people with epilepsy are able to control seizures with existing treatment options.
About the Epilepsy Foundation
The Epilepsy Foundation, a national non-profit with affiliated organizations throughout the United States, has led the fight against epilepsy since 1968. The Foundation’s goals are to ensure that people with seizures are able to participate in all life experiences; and prevent, control and cure epilepsy through services, education, advocacy and research, so not another moment is lost to seizures. For additional information, please visit www.epilepsyfoundation.org
