Our Impact

The LGS Foundation is a nonprofit organization that acts as a convener of the LGS community. Since our inception in 2008, we have engaged and educated all of our community stakeholders – patient families, clinicians, researchers, industry partners, and others – to envision and fight for better treatments, and one day cures, for LGS. We believe that efforts to improve the quality of life for individuals who feel the impact of LGS must include the patient-family’s voice and experience to help guide outcomes.

Our Plan:

Impact

 

 

 

The content for our strategic plan was derived by examining the LGS landscape and listening to a broad range of input from key stakeholders within our community regarding current community priorities, emerging needs, and organizational strengths and vulnerabilities.

2024-2028 STRATEGIC PLAN–

Our Reviews:




Our Impact & Outcomes:

View our 2023 Annual Report

  • The LGS Foundation Community of Support reached 7000 global members.
  • The LGS Foundation welcomed New Executive Director Tracy Dixon-Salazar, Ph.D.
  • The 6th Annual Walk ‘n’ Wheel raised over $60,000 to fund LGS research. Over 50 butterflies were released at the ceremony to remember those we have lost to LGS and to support our many bereaved families.
  • The LGS Foundation was featured on the Lifetime TV show The Balancing Act in a segment called Behind the Mystery of LGS.
  • The LGS Foundation launched 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 launched the Elevate Patient Assistance Program to provide funds for durable medical equipment to those with LGS.
  • The LGS Foundation worked with experts and was awarded a PCORI grant comparing palliative surgery with adding an additional anti-seizure medication in LGS. This is the first-ever comparative effectiveness study in LGS.
  • The LGS Foundation hosted the first-ever LGS Research Meeting of the Minds to begin the search for disease-modifying therapies for LGS.
  • LGS Foundation started the LGS Dad's Support Group.
  • The LGS Foundation funded its 13th LGS research grant and has funded more than $700,000 in research on LGS.
  • The LGS Foundation Family Ambassador Program grew to 50 Ambassadors worldwide 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-hosted 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, the FDA has approved six drugs for use in LGS. The LGS Foundation continues to be an active partner in ensuring the patient family's 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

  • The LGS Foundation became a Chan Zuckerberg Initiative (CZI) Rare As One Program member and was awarded a $600,000 grant to build capacity. 
  • During the global pandemic, the LGS Foundation hosted 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 Illuminated for LGS to help raise awareness on International LGS Awareness Day, and singer-songwriter Noah Guthrie performed.
  • The LGS Foundation partnered 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 funded a grant to study the first-ever animal model of LGS.
  • The LGS Foundation hosted 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 hosted local and online MeetUps for families impacted by LGS.
  • The LGS Foundation became a governing member of the Infantile Spasms Action Network (ISAN) and co-led the effort to raise awareness of infantile spasms.
  • The LGS Foundation officially began 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 conducted 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. 
  • The LGS Foundation hosted its 5th Family Conference for LGS in Orlando, FL, bringing together researchers, clinicians, and hundreds of LGS family members.
  • The LGS Foundation hosted its first International Family and Professional Conference in the United Kingdom.
  • The LGS Foundation launched its first-ever Walk ‘n’ Wheel to raise funds to battle LGS and hosted its first LGS Research Roundtable at the annual American Epilepsy Society meeting.
  • The LGS Foundation hosted 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
  • The LGS Foundation helped launch the Rare Epilepsy Network, a PCORI-funded Registry of patient data on LGS and other rare forms of epilepsy.
  • The LGS Foundation funded its first-ever research grant.
  • The LGS Foundation launched the LGS Foundation Research Award Program to fund research to find the cures for LGS.
  • The LGS Foundation established and hosted the first International LGS Awareness Day on November 1st, and Niagara Falls lit up in green and purple for LGS Awareness.
  • The LGS Foundation held 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.
  • The LGS Foundation hosted its first regional support group in San Diego.
  • The LGS Foundation established its online community of support.
  • The LGS Foundation was founded by Christina SanInocencio, sister to Michael, an adult living with LGS.
  • Team LGS Foundation attended the first National Walk for Epilepsy in Washington, DC.

Updated 09/25/24 (KK)

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