Rare Disease Week 2024
Every year on the last day of February, the rare disease community unites as one to observe Rare Disease Day. February is a rare month with only 28 days and this February was ultra rare with the extra day, February…
We are delighted to welcome Karen Groff as the new President of the LGS Foundation Board of Directors. Karen is a retired educator and long-time member of the LGS Community. As a teacher, elementary principal, and staff development coordinator,…
By Darla Davison
This is a question I’ve asked myself many times over the years. Through the constant ups and downs and watching my son, Aaron (age 35), suffer for decades, my answer has varied. In the end, I can see that my…
The recent AES Annual Meeting brought together more than 6,000 healthcare providers, scientists, patient advocates, industry partners, and other professionals dedicated to better outcomes for people with epilepsy. It was really energizing to attend this meeting and hear about all…
Written By: Jennifer Griffin, Director of Family Support Just 6 months after we took the nation’s capital by storm for Rare Disease Week on Capitol Hill, the LGS Advocates were at it again in their local communities as part of…
Our community is stronger with facts! When it comes to Vagus Nerve Stimulator therapy (VNS Therapy) for seizure reduction, do you know fact from fiction?
We are Stronger with Facts: Let’s stamp out VNS Myths! LGS is tough; finding information doesn’t need to be. That’s why we are helping our community separate fact from fiction around Vagus Nerve Stimulation (VNS) Therapy. Often, information on specific…
The following list contains links to third-party websites. The LGS Foundation is not responsible for the content or privacy policies of these external sites. While we try to only list sites here that we feel contain useful information for our…
Order or Download your free About LGS Trick or Treat cards and spread awareness during Halloween.
Get Your About LGS Trick Or Treat Cards Today! (Available in English and Spanish) Share these cards with others while Trick-or-Treating to begin a conversation about LGS. Cards are business card sized (3.5 inches x 2 inches) and come in…
A Clinical Study for Children and Adults with Lennox-Gastaut Syndrome
The LGS DISCOVER study, also identified as the YKP509C003 study, is a clinical trial for pediatrics and adults with Lennox-Gastaut Syndrome (LGS). The LGS DISCOVER study will evaluate whether an investigational medicine called carisbamate, when given along with other anti-seizure…
RNS System Responsive Stimulation for Teens and Adults with Lennox-Gastaut Syndrome (LGS) Study
The purpose of the RNS System Lennox-Gastaut Syndrome (LGS) study is to generate preliminary safety and effectiveness data for brain-responsive neurostimulation of thalamocortical networks as an adjunctive therapy in reducing the frequency of generalized seizures in individuals 12 years of…
