Tracy Dixon-Salazar, PhD, Executive Director of the Lennox-Gastaut Syndrome (LGS) Foundation, describes the resources the foundation has in order to help the LGS community.
LGS is a rare neurological condition that usually begins in childhood. It is characterized by multiple types of seizures and intellectual disability. LGS patients often have multiple seizures per day. These seizures are often treatment-resistant. LGS patients are also prone to seizure clusters and status epilepticus. The condition is not congenital. It can be caused by brain malformations, perinatal asphyxia, severe head injury, central nervous system infection, and inherited degenerative or metabolic conditions. In about one-third of cases, no cause can be found.
As Dr. Dixon-Salazar explains, the LGS Foundation has an online support group of 6000 members from 27 countries. This group allows parents of LGS patients to help each other by suggesting ways to make daily life easier and by spreading information about latest research, better ways to navigate the healthcare system, etc. The LGS Foundation also has a patient assistance program which provides financial assistance to LGS patients. Additionally, the foundation funds research and hosts community events. One program that Dr. Dixon-Salazar is particularly proud of is the “Siblings Rock Program” which provides resources for siblings of LGS patients, a group that has been previously overlooked.
To learn more about LGS and other rare neurological disorders, visit checkrare.com/diseases/neurology-nervous-system-diseases/
