October 31st, 2022
Join us for the FIRST EVER Halloween Masquerade Ball at Epilepsy Awareness Day at Disneyland. This event is free to all registered Expo guests. Help us raise awareness of LGS. *Make sure to register for the Expo; you’ll get an…
The LGS Foundation recognizes Those who have made a significant Impact in the LGS community The LGS Foundation appreciates and values our community’s commitment to ending the devastation and suffering caused by LGS and recognizes the significant impact of the…
Care for the Caregiver
Being a caregiver for a loved one with LGS is a commitment unlike any other. Caregiving requires limitless amounts of energy, empathy, and patience. While most caregivers will tell you that taking care of a loved one is a genuinely…
3/19/2004 - 10/01/2016
Johnathan was my first born. He was born premature and not breathing. Because of his traumatic birth, his brain endured an injury that caused a variety of disorders. One the many we would later discover was Lennox-Gastaut Syndrome. His journey…
6/26/1973 - 12/16/2016
Brian was the oldest of our three sons. He began having petit mal seizures (head drops) at 9 months old. On the day of his first MMR vaccination, he encountered his first tonic-clonic seizure. It lasted approximately 15 minutes. Until…
4/17/2004 - 1/14/2021
Aidan was born in Kalispell, Montana in 2004 and was a healthy, curious and very talkative little boy. He grew up loving the Montana way of life. He enjoyed camping, canoeing, collecting insects and fishing with dad. He loved books,…
01/05/2010 -04/14/2022
Joseph was born with a rare medical condition called cobolomine e abnormality he was the first in the US and first at birth in the world. Joseph fought a hard fight and showed them it can be done he got…
11/25/2016 - 4/08/2022
There is so much. It was a long journey, yet not long enough all at once. For 5 years he consumed me. I will always miss him. I don’t even know what to say to explain our story. He was…
9/16/1995 - 9/13/2013
Matthew’s spirit lives on today through having touched many lives in his almost 18 years. I noticed Matt’s seizures, which presented as stretching episodes, on our first day home from the hospital. After two months of the pediatrician telling me…
Lennox-Gastaut Syndrome (LGS) is a rare and severe epilepsy disorder that begins in early childhood and affects “approximately 48,000 children and adults in the United States” and “1 million worldwide,” according to the LGS Foundation. This constitutes for only 1…
