SAN DIEGO, May 31, 2021 /PRNewswire/ — On June 5, the Lennox-Gastaut Syndrome (LGS) Foundation will join families and friends from around the world as they ‘Step Towards a Cure, Together.’ On this day, hundreds of individuals and family members impacted by LGS will come together, in-person and online, to increase public awareness of this rare disease and to share their stories of hope for the future.
The 6th Annual LGS Foundation Walk ‘n’ Wheel ® is hosted by the LGS Foundation and will celebrate the ability of those with LGS, who suffer many challenges due to frequent, uncontrolled seizures, to walk, ride, and wheel in their wheelchairs all to raise funds for research into disease-modifying therapies and cures for LGS.
LGS is a rare, severe, life-threatening, epilepsy that leads to frequent seizures, significant brain damage, and a lifelong dependence on others for their care. Approximately 1 million children and adults worldwide have LGS, there is no cure, and more than 90% with LGS suffer life-long intellectual disability due to brain damage from recurrent seizures.
«My daughter was a healthy, thriving two-year-old when she began having seizures out of the blue. Nothing we tried stopped her seizures and by age five her epilepsy had evolved into LGS,» explained Dr. Tracy Dixon-Salazar, Executive Director at the LGS Foundation. «The abnormal brain waves seen in LGS are a sign the seizures are causing massive brain damage, and this prevented our daughter from developing properly. It also almost killed her many times. This is not uncommon though and is what happens to more than 90% of those with LGS. We have to stop it! We need to find therapies that will reverse LGS, or stop the progression, and we need to do it soon before more children suffer irreversible brain damage, or worse, die. All funds we raise from the Walk ‘n’ Wheel will go to support research.»
The LGS Foundation is the only global organization dedicated to improving the lives of the many families impacted by LGS by raising awareness of LGS, supporting and educating families, and funding critical scientific research.
For more information, visit lgsfoundation.org
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SOURCE LGS Foundation