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 clinical study is assessing the safety of the investigational drug, bexicaserin, and its potential to reduce the number of seizures in children and adults with DEE. Eligible participants include individuals aged 2 to 65 who have been…
Advancing Evidence-Based LGS Care Across the Lifespan
2025 LGS Research Meeting of the Minds Advancing Evidence-Based LGS Care Across the Lifespan This bi-annual Meeting of the Minds research conference brings together hundreds of researchers, healthcare providers, clinical trialists, scientists, advocates, caregivers, and industry partners to push the…
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…
Zander's Story
At 14 months old Zander had open heart surgery. As a result, 2 weeks post-surgery Zander suffered cardiac arrest. Before this, he was a thriving little boy. Then on December 19th, his life changed forever. We spent 4 months in…
My daughter Amanda started having seizures when she was two years old. After many hospitalizations and failing 12 medications, she was diagnosed with LGS, and our quest to find a treatment that worked for her began. Amanda’s seizures always came…
Valerie is smart and sassy. Loving and thoughtful. She gives the best hugs (on her terms only…lol). Valerie never gives up. She loves music, movies, coloring, reading, art, theater and shopping. She has the prettiest brown doe eyes ever. Valerie…
You Can Make a Difference for Families Impacted by LGS!
This holiday season, help us bring hope and essential support to those impacted by Lennox-Gastaut Syndrome (LGS). Your gift provides critical resources, education, and connection for families who need it most. Our goal is to raise $50,000, but we’ll only reach…
Robbie had his first seizure at 6 months old. It was a tonic-clonic that lasted an hour. At 9 months old, he started having infantile spasms daily. We never truly got control of his epilepsy after that. The early days…
Born in early October 2010 with a love for Halloween, Selena has been on the move ever since. She is labeled as non-verbal, but she’s not quiet. She can’t walk independently, but crawling and knee walking independently doesn’t slow her…
