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…
Charlie was born on February 25, 2011, in Lansing, Michigan—the youngest of five grandsons. From the very beginning, he was full of life. He reached milestones quickly—talking, walking, and potty training earlier than his cousins. He was healthy, vibrant, and…
04/29/2010 - 11/16/2024
Hesekiah brought joy into every room he entered, always wearing the brightest smile — no matter what he was facing. He had a heart full of love for everyone he met and a deep appreciation for life’s simple pleasures, especially…
Our Journey with Evan and LGS
My name is Ashlee, and I’m the proud mother of Evan—our joyful, resilient 5-year-old son who has completely reshaped our world. Evan was born with Muscle-Eye-Brain Disease, a rare genetic condition that presents many medical challenges. From abnormal brain folds…
12/25/1996 - 04/07/2025
Harry’s Joy Ride: A Tribute to Laughter & Love One of our favorite memories with Harry happened on long car rides. Like many families, we’d be cruising down the highway, music playing, conversations flowing. But what made our drives unforgettable…
Now available virtually (in-home)!
The Lighthouse Clinical Study is currently enrolling children and adults with Lennox-Gastaut Syndrome (LGS) to evaluate a new potential treatment. The goal of this study is to learn whether an investigational medication called clemizole can help reduce the number of…
02/20/2006 - 12/21/2024
Jesus, whom I will always remember as the little Jesus of my heart, was a child who since he was born had many medical complications apart from epilepsy. He was always very brave, even though he never had the opportunity…
Hope Abounds as Lennox-Gastaut Syndrome (LGS) Research Took Center Stage at the 2024 American Epilepsy Society Meeting Increased awareness and research positioned LGS as a major area of interest at this year’s AES Annual Meeting. LGS was highlighted as more…
A New Wave of Hope
The DEEp OCEAN study is evaluating the investigational medicine bexicaserin for the treatment of seizures associated with developmental and epileptic encephalopathies (DEEs). The study has now completed enrollment, marking an important milestone toward understanding the potential of this investigational treatment….
What are palliative and hospice Care? Palliative care and hospice care both focus on the comfort, care, and quality of life for individuals with a serious illness. The biggest difference between the two is that palliative care supports a person’s…
