The LGS Foundation is dedicated to providing a comprehensive LGS Learning and Resource Center so those living with LGS can #NeverStopLearning
Whether it is to find a doctor, learn about epilepsy surgery, understand seizure clusters, or something else, the LGS Learning and Resource Center is here for you.
We are working hard to add topics. Is something missing? Please let us know at info@lgsfoundation.org
Individuals of any age who meet the criteria for drug-resistant epilepsy (defined as failure to achieve seizure freedom after using two or more anti-seizure medications) are considered surgical candidates and are eligible for assessment. Epilepsy surgery is complex and differs…
Finding the right surgery for your LGS loved one takes time and careful planning. The full evaluation process usually takes a few weeks to a few months. While this might feel like a long wait, getting a thorough picture of…
Is My Surgeon Qualified? All surgeons must be licensed by their state. Some hospitals also require extra certifications. For children, you’ll want a doctor who has specialized training in brain surgery specifically for kids. Brain surgery in children requires extra…
What is Responsive Neurostimulation (RNS)? The word “responsive” means this device is smart, it monitors what’s happening in the brain and reacts in real time. The RNS System is a small, programmable device that continuously monitors brain activity. When it…
The definition and rules governing Guardianship vs. Conservatorship can vary from state to state; therefore, please seek legal advice for details on your specific state laws and what type of guardianship or conservatorship your loved one will require. A guardianship…
The struggle to get a good night’s sleep is one of the most debilitating and constant challenges LGS families face. Yet good sleep is essential for emotional and physical well-being, not just for those with LGS, but for the entire…
The Disease Management section helps caregivers collect and organize key medical information, including contact information for all medical providers, a full medical history, current medications and dosages, allergies, medical equipment, and more. It also includes a Seizure Action Plan and…
Families of children with drug-resistant epilepsy often face challenges that go beyond seizures — such as learning difficulties, behavior struggles, or attention issues. Many parents are left asking: What’s really going on, and how can I help my child? To…
More seizure-free days may be on the horizon
The EMERALD clinical study is evaluating an investigational medicine, relutrigine, to understand its safety and how effective it may be at reducing seizures in children and adults living with Developmental and Epileptic Encephalopathies (DEEs). Relutrigine is an investigational medicine that…
The Daily Living section equips caregivers with practical, everyday support strategies. It outlines personal care tasks – such as bathing, toileting, and similar routine activities – and explains how to determine if home health services might best support your loved…
