Your generosity fuels breakthroughs!
This holiday season, we’re inspired by the courage of those living with Lennox-Gastaut Syndrome: SUPERHEROES who face enormous challenges with strength and resilience. With your support, we will advance new LGS therapies, treatment guidelines, non-invasive deep brain stimulation methods, and more….
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…
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…
When great minds meet, great breakthroughs happen!
The 2025 LGS Research Meeting of the Minds, held July 21–22, brought together over 100 caregivers, healthcare professionals, researchers, and industry partners committed to improving care for individuals living with Lennox-Gastaut Syndrome (LGS) and associated developmental and epileptic encephalopathies (DEEs)….
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…
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…
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…
