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 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…
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)….
Help Raise Awareness this November!
Together for a Breakthrough, Today & Every Day As we close out this year’s awareness campaign, we’re reminded of what makes the LGS community extraordinary: your courage, your voices, your actions, and your unwavering hope. Because of you, more people…
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…
