Our Story

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

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.

Twenty-five years ago, LGS barged into our lives, unannounced and uninvited. While Savannah is doing better today than she ever has, every day I learn of more and more stories of the devastation that LGS is causing to children and adults, just as it has to my family. 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.

It’s time to end the widespread suffering and devastation caused by LGS. We hope you will join us as we seek an end to the devastation and suffering caused by LGS.

 

With hope,

Tracy Dixon-Salazar, PhD
Mom of Savannah, an adult living with LGS
Read more about our story here

 

Historic Timeline

2008

The LGS Foundation is founded by Christina SanInocencio, sister to Michael, an adult living with LGS.

Team LGS Foundation attends the first National Walk for Epilepsy in Washington, DC.

2009

The LGS Foundation establishes its online community of support.

2010

The LGS Foundation hosts its first regional support group in San Diego.

2011

The LGS Foundation holds its 1st Family Conference on LGS in Arlington, VA. Researchers, clinicians, and seventy patient family members from across the U.S. attended this historic two-day-long event.

2012

The LGS Foundation establishes and hosts the first International LGS Awareness Day on November 1st and Niagara Falls lights up for LGS Awareness.

2013

The LGS Foundation launches the LGS Foundation  Research Award Program to fund research on LGS and funds its first-ever research grant in 2014.

2014

The LGS Foundation helps launch the Rare Epilepsy Network, a PCORI-funded Registry of patient data on LGS and other rare forms of epilepsy.

2015

The LGS Foundation establishes the Ambassadors Program, evolving from the LGS Mentoring Program.

2016

The LGS Foundation launches its first-ever Walk ‘n’ Wheel to raise funds to battle LGS and hosts its first LGS Research Roundtable at the annual American Epilepsy Society meeting.

The LGS Foundation hosts its first International Awareness Day Event in Baltimore, MD.

The LGS Foundation helps LGS gets designated ICD-10-CM diagnosis codes used under the Health Insurance Portability and Accountability Act (HIPAA). These codes are important and used by the health care ecosystem to track health care statistics, disease burden, quality outcomes, mortality statistics, and billing.

G40.81 Lennox-Gastaut Syndrome

  •  G40.811 …… not intractable, with status epilepticus
  •  G40.812 …… not intractable, without status epilepticus
  •  G40.813 …… intractable, with status epilepticus
  •  G40.814 …… intractable, without status epilepticus

2017

The LGS Foundation hosts its 5th Family Conference for LGS in Orlando, FL bringing together researchers, clinicians, and hundreds of LGS family members.

The LGS Foundation hosts its first International Conference in the United Kingdom.

2018

The LGS Foundation officially begins honoring the lives of the many we lose each year to LGS. The bereaved will always have a place in our community.

The LGS Foundation conducts its first Caregiver Concerns Survey.

2019

The LGS Foundation hosts a Patient-Focused Drug Development (PFDD) meeting on LGS and other Developmental and Epileptic Encephalopathies (DEE) to advise the FDA and others on what it is like to live with LGS.

The LGS Foundation hosts local and online MeetUps for families impacted by LGS.

The LGS Foundation becomes a governing member of the Infantile Spasms Action Network (ISAN).

2020

During the global pandemic, the LGS Foundation hosts the 7th Family Conference for LGS online and more than 450 researchers, clinicians, and family members join in.

More than 50 buildings and landmarks around the globe Illuminate for LGS to help raise awareness on International LGS Awareness Day and singer-songwriter Noah Guthrie performs an Awareness Day concert.

The LGS Foundation partners with the Dravet Syndrome Foundation and Tuberous Sclerosis Alliance to create the Seizure Action Plan Coalition (SAPC).

2021

The LGS Foundation hires New Executive Director, Tracy Dixon-Salazar, Ph.D.

The 6th Annual Walk ‘n’ Wheel raises over $60,000 to fund LGS research! Over 50 butterflies are released at the ceremony to remember those we have lost to LGS and to support our many bereaved families.

The LGS Foundation launches Pixels with a Purpose, a campaign to bring the latest information and resources to families living with LGS.

The LGS Foundation launches the Elevate Patient Assistance Program.

The LGS Foundation works with experts to get a PCORI grant comparing palliative surgery with an additional anti-seizure medication in LGS, the first study of its kind to do so.

The LGS Foundation hosts the first-ever LGS Research Meeting of the Minds to begin the search for disease-modifying therapies for LGS.