Our Impact

Our Outcomes and Impact

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 in green and purple for LGS Awareness.

2013

  • The LGS Foundation launches the LGS Foundation Research Award Program to fund research to find the cures for LGS.

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.
  • The LGS Foundation funds its first-ever research grant.

2015

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 Gala in Baltimore, MD.
  • The LGS Foundation pushes for designated ICD-10-CM diagnosis codes used under the Health Insurance Portability and Accountability Act (HIPAA). These codes are important and used by the healthcare ecosystem to grant drug access to patients, track healthcare 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 Family and Professional Conference in the United Kingdom.

2018

  • The LGS Foundation officially begins honoring the lives of the many we lose each year to LGS. Bereaved families will always have a place in our community. #ForeverLoved
  • The LGS Foundation conducts the first-ever survey of caregiver concerns in LGS getting more than 430 responses from 17 countries. This survey guided our Patient-Focused Drug Development meeting in 2019. Families identified Seizures and Safety issues as their #1 concern, with daily communications and behavior in their LGS loved one also being major concerns. 

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) and co-leads the effort to raise awareness of infantile spasms.

2020

  • The LGS Foundation becomes a member of the Chan Zuckerberg Initiative (CZI) Rare As One Program and is awarded a $600,000 grant to build capacity. 
  • During the global pandemic, the LGS Foundation hosts the 7th Family Conference for LGS online and more than 450 researchers, clinicians, and family members joined 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.
  • The LGS Foundation partners with the Dravet Syndrome Foundation and Tuberous Sclerosis Alliance to create the Seizure Action Plan Coalition (SAPC) to raise awareness of seizure emergencies and seizure action plans.
  • The LGS Foundation funds a grant to Dr. Jennifer Kearny to study the first-ever animal model of LGS.

2021

  • The LGS Foundation Community of Support reaches 7000 global members.
  • The LGS Foundation welcomes 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 is featured on the Lifetime TV show The Balancing Act in a segment called Behind the Mystery of LGS.
  • The LGS Foundation launches Pixels with a Purpose, a campaign to bring the latest information and resources to families living with LGS using proven online, digital strategies.
  • The LGS Foundation launches the Elevate Patient Assistance Program to provide funds for durable medical equipment to those with LGS.
  • The LGS Foundation works with experts and is awarded a PCORI grant comparing palliative surgery with an additional anti-seizure medication in LGS. This is the first-ever comparative effectiveness study in LGS.
  • The LGS Foundation hosts the first-ever LGS Research Meeting of the Minds to begin the search for disease-modifying therapies for LGS.
  • LGS Foundation starts the LGS Dad’s Support Group.
  • The LGS Foundation funds its 13th LGS research grant and has funded more than $700,000 in research on LGS.
  • The LGS Foundation Family Ambassador Program grows to 50 Ambassadors from around the world who provide patient navigator assistance to new families starting their LGS journey.
  • The LGS Foundation, as a founding member of the Seizure Action Plan Coalition, co-hosts the first-ever Seizure Action Plan Awareness Week. which was a huge success and raised much-needed awareness of seizure emergencies.
  • Since the LGS Foundation was founded, the annual number of research publications focusing specifically on LGS has more than tripled. 
  • The LGS Foundation provides critical input on unmet needs in the patient community and offers guidance to those developing new treatments. Since the LGS Foundation’s inception in 2008, six drugs for use in LGS have been approved by the FDA. The LGS Foundation continues to be an active partner in ensuring the patient voice is present in all therapy development. Treatments for LGS include:
        • 1998: Lamictal (Lamotrigine) approved for use in LGS
        • 2008: Banzel (Rufinamide) approved for use in LGS
        • 2008: Felbatol (Felbamate) approved for use in LGS
        • 2011: Onfi (Clobazam) approved for use in LGS
        • 2012: Topomax (Topiramate) approved for use in LGS
        • 2018: Epidiolex (Cannabidiol) approved for use in LGS
        • 2018 Sympazan (Clobazam oral film) approved for use in LGS
        • 2019: Nayzilam (Midazolam nasal spray) approved for use in seizure clusters
        • 2020: Valtoco (Diazepam nasal spray) approved for use in seizure clusters
        • 2022: Fintepla (Fenfluramine) approved for use in LGS

2022

  • The LGS Foundation has grown the internal team and now has 7 full-time staff members dedicated to improving the lives of those impacted by LGS.
  • The LGS Foundation received a third year of funding from the Chan Zuckerberg Initiative (CZI) Rare as One (RAO) program. The grant, totally $600,000, is being used to build the Foundation’s internal infrastructure with a strong emphasis on implementing best management practices, building for sustainability, and advancing diversity, equity, and inclusion (DEI).
  • The LGS Foundation hosts the 8th International LGS Family & Professional Conference, bringing together over 300 community members and medical professionals for three days of education, science, and community building.
  • The LGS Foundation awarded over $40k in financial assistance to families impacted by LGS through the Elevate Patient Assistance Program.
  • The LGS Foundation awarded $50k in research grants through the Cure LGS 365 Grant Program.

Updated June 15, 2023

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