BOHEMIA, N.Y., March 16, 2017 /PRNewswire/ -- Today, the LGS Foundation announced a new partnership with the Epilepsy Genetics Initiative (EGI), a signature program of Citizens United for Research in Epilepsy (CURE). The partnership has been designed as a pilot program between the organizations to help more individuals affected by Lennox-Gastaut Syndrome receive genetic testing to help find causes to this severe form of epilepsy.
EGI is an initiative created by CURE to bridge the gap between people with epilepsy, clinicians, and researchers to advance precision medicine in epilepsy. EGI has created a centralized database that holds the genetic data of people with epilepsy. The data (called exome data) will be analyzed and reanalyzed until the cause of the person's epilepsy is found. Findings will be reported back to the person's doctor. The data will also be made available to advance research.
The LGS Foundation has partnered with EGI to ensure that more individuals with Lennox-Gastaut Syndrome have access to genetic testing. To start, the pilot program will enable 100 individuals with LGS and their family members to receive free genetic testing through an EGI enrollment site. The testing involves a blood test that your doctor will order.
"Approximately 30% of individuals who are diagnosed with LGS don't know what their cause is," says Melanie Huntley, PhD, President of the LGS Foundation. "Whole exome sequencing helps researchers to identify genetic problems that can provide clues to why they started to have seizures and developmental delay. Once we know this information, we are hopeful that new treatment options can be developed to target problematic genes, which can hopefully lead to a better prognosis."
"EGI is an exciting initiative that may help patients and their families, as well as researchers, understand the cause of seizures," said Laura Lubbers, PhD, Chief Scientific Officer for CURE. "Ultimately, this information may lead to better treatments and one day a cure for those struggling with epilepsy. CURE is delighted to have the opportunity to work closely with the LGS community to help better understand this devastating disorder."
If your loved one has already received exome sequencing, you can still be a part of EGI without enrolling in the LGSF/ EGI pilot study. If you have not yet received whole exome sequencing and are interested in enrolling in the LGSF/ EGI pilot, please visit www.lgsfoundation.org/EGI or www.cureepilepsy.org/EGI for eligibility and criteria.
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, a resistance to medication and/or therapies, and intellectual disability. In the United States, it is estimated that less than 50,000 people are affected.
For more information on Lennox-Gastaut Syndrome, please visit www.lgsfoundation.org.
Citizens United for Research in Epilepsy (CURE) is the leading nongovernmental agency fully committed to funding research in epilepsy. Since its inception in 1998, CURE has been at the forefront of epilepsy research, raising more than $40 million to fund research and other initiatives that will lead the way to a cure for epilepsy. CURE funds grants for emerging and established investigators, and to date has awarded more than 200 cutting-edge projects in 15 countries around the world. To learn more, visit www.cureepilepsy.org
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SOURCE LGS Foundation