Accelerate Research. Change Lives.
The LGS & Associated DEE Research Accelerator brings industry, academia, and patient advocacy together in a pre-competitive environment — eliminating duplication and moving the needle faster for those living with LGS and related Developmental & Epileptic Encephalopathies (DEEs). Member Benefits …
Why Showing Up Matters
Every year, patient advocates, caregivers, and researchers from across the country travel to Washington, D.C. to attend Rare Disease Week on Capitol Hill, organized by the EveryLife Foundation for Rare Diseases. They bring one shared goal – to make sure…
For 42 years we assumed our beloved son Charlie was singular in his complex array of medical issues. It was only six months ago that we learned he belongs to a sliver of individuals with Lennox-Gastaut Syndrome. A simple notation…
Caregiving requires sacrificing the freedoms that most families take for granted. You lose the ability to simply do what you want, when you want—whether that’s deciding how to spend the next hour or planning a family vacation. Being a caregiver…
Highlights from the 2025 American Epilepsy Society Annual Meeting
The 2025 American Epilepsy Society (AES) Annual Meeting took place December 5–9 in Atlanta, Georgia, bringing together nearly 6,000 epilepsy clinicians, researchers, advocates, and industry partners from more than 60 countries. Across the meeting, Lennox-Gastaut syndrome (LGS) was a clear…
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…
The Advocates for LGS had a busy summer. With the recent passage of HR 1 (The One Big Beautiful Bill Act), the healthcare landscape has shifted dramatically, leaving an uncertain future for many of our loved ones with LGS. Now…
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…
