Our vision: To end the suffering and devastation caused by LGS.
Our Mission: The Lennox-Gastaut Syndrome (LGS) Foundation is a Nonprofit Organization Dedicated To improving the lives of individuals Impacted by LGS through Advancing Research, Awareness, Education, and Family Support.
A Message from the Executive Director
Welcome to the LGS Foundation. You are not alone. No matter where you are in your journey with LGS, we are here to support you.
Over twenty-five years ago, my healthy, typically developing two-year-old daughter, Savannah, had her first seizure. More than 40,000 seizures would follow over the next 16 years. Our family sat by helplessly as we watched the seizures evolve into Lennox-Gastaut Syndrome (LGS) and cause more and more brain damage in our little girl. We felt so isolated and alone. In 2008, the LGS Foundation was founded by Christina SanInocencio who watched her brother Michael, and her parents, struggle at the hands of LGS for years. It was created so families like mine would not be alone. Our family was so happy to finally find our LGS community of support.
Like many families living with LGS, medically there was nothing we didn’t try to stop our daughter’s seizures. There was no stone we left unturned. Sadly, science and medicine simply could not help her. For twelve years I studied in college looking for answers to what could cause epilepsy, ultimately getting my Ph.D. in Neuroscience. Then one day, the answers came. We found the cause of Savannah’s seizures, which led to her LGS, and that led us to a precision therapy that changed our lives. The seizures dramatically decreased with this new treatment, and Savannah began to learn and develop again.
While Savannah is doing better today than she ever has, every day I learn of more and more stories of the devastation caused by LGS. It’s time to change that!
At the LGS Foundation, every day we:
- Mobilize our resources to drive scientific breakthroughs for stabilizing treatments for LGS, and one day, develop preventive and reversative therapies for this devastating early-life epilepsy syndrome.
- Fight for a world where the best medical care is not based on luck and where navigating and quarterbacking the healthcare system does not fall heavily on the shoulders of overburdened caregivers and patient families.
- Build a strong, supportive, educated community.
- Offer timely, impactful support programs for patient families navigating the LGS journey.
- Build awareness within our own community and the larger epilepsy community around the devastation and suffering caused by LGS.
It’s time to end the widespread suffering and devastation caused by LGS. We hope you will join our family. Welcome to our community.
Tracy Dixon-Salazar, PhD
Mom of Savannah, an adult living with LGS
Read more about our story here
When the LGS Foundation was founded in 2008, there was no community of support for families living with LGS. The founders had one goal — to improve the lives of those impacted by LGS.
In the ensuing years, the fundraising and commitment of the LGS community have enabled the LGS Foundation to support fundamental research in the laboratory that has led to groundbreaking discoveries. By expanding our knowledge of the underlying biology of the disease, researchers have paved the way for creating new treatments. We have also grown our community of support to over 7,000 members and increased our family support programs to target the needs of our growing number of LGS families.
The LGS Foundation has a steadfast commitment to improving lives and advancing LGS research. We also believe wholeheartedly that patient family engagement throughout the entire clinical trial and drug development process is crucial to saving time, money, and creating something meaningful for families. Because of this, our community has helped enable 4 new treatments for LGS, with several additional clinical trials already underway or soon starting. We have made incredible progress and many lives have been improved.
- The unparalleled power of a community of support.
- The ongoing need to fund innovative research.
- The urgency in finding better treatments.
- The motivation of our donors to make an impact specifically in the fields of LGS and related epilepsies.
- The importance of transparency and accountability of not only our organization but also the researchers that we fund.
- The need for global collaboration in order to find cures.
Read more about Our Approach here.
Updated April 10, 2022