Our grandson Patrick is 28 years old and has lived with Lennox-Gastaut Syndrome (LGS) since he was just 4. He’s the eldest of our daughter’s four children, and for the past eight years, he has lived with us full-time. Before…
12/04/90 - 03/12/24
Natasha’s journey began with light, laughter, and love. At just five years old, she developed epilepsy, facing every seizure type imaginable. Over time, this cruel condition stole her ability to speak, swallow, and walk. Yet, through it all, Natasha’s spirit…
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…
A Story of Love, Resilience, and Advocacy
My name is Matthew. I’m 36 years old, and my story begins with my beautiful brother, Thomas. Thomas was born in 1983, and just four years later, he was diagnosed with epilepsy. At the time, our family knew very little…
A Life of Love, Resilience, and Butterflies
Around the age of three, Maurice began having seizures. They weren’t just one kind—he experienced several types, each unpredictable and frightening. He fell often and eventually wore a helmet to protect his head. Despite this, Maurice still lost his front…
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…
