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
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…
Some conversations are tough to have when you don’t know where to start. And especially when it comes to talking about the topic of Long-Term Care Plans for your loved one with a rare epilepsy. Below are insights shared by…
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…
Growing old is an inevitable part of life, but it can be especially daunting for those who care for individuals with a rare epilepsy. Life as a caregiver (e.g., cooking, managing medicines, medical appointments, therapy, etc.) can lead to decreased…
Ages 19-22
Transition to adulthood is a complex, confusing, and often emotional process. It’s also the first important step to plan for as you consider the long-term adult C.A.R.E. Plan for your loved one. For each family, the process can look and…
Ages 17-18
Many families ask, “When should I start planning?” Some families may be feeling they are already behind in the process and are wondering, “Is it too late to start planning?” If your loved one is older than age 13 and…
Ages 13-16
Many families ask, “When should I start planning?” Some families may be feeling they are already behind in the process and are wondering, “Is it too late to start planning?” While this guide targets age 13 as a starting point…
